SCDAArsquos HRSA-funded Newborn Screening Grant Update

Kim Smith-Whitley MDChief Medical Officer

Sickle Cell Disease Association of America Inc

Introduction

bull Sickle cell disease is an inherited hemoglobinopathycharacterized by hemolysis and vascular occlusion

bull Recent research has led to advances in clinical care improved the understanding of the underlying pathophysiology of sickle cell disease yet morbidity and mortality remain high

Introduction

bull Continued high morbidity and mortality

bull Few disease-modifying therapies

bull No treatments to alter the course of acute painchronic pain

bull No ldquouniversalrdquo cure

bull Poor access to high quality care

ndash Need to improve existing treatment regimens

Sickle Cell DiseaseThe Challenge

bull High cost medical care

bull New health policy development impacting sickle cell population without advocacy due to lack of data

bull Few medical professions with expertise in sickle cell disease

bull Relatively high rate of deaths in young adult age group and continued decreased survival overall

Sickle Cell DiseaseThe Challenge

SCDAArsquos Mission

bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo

Clinical Care and Research Agenda

bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every

stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner

bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with

knowledge and expertise in sickle cell disease

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Increased Access to High Quality Health Care Across the Lifespan

Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications

Low-risk Profile Cures Accessible for All People with Sickle Cell Disease

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Introduction

bull Sickle cell disease is an inherited hemoglobinopathycharacterized by hemolysis and vascular occlusion

bull Recent research has led to advances in clinical care improved the understanding of the underlying pathophysiology of sickle cell disease yet morbidity and mortality remain high

Introduction

bull Continued high morbidity and mortality

bull Few disease-modifying therapies

bull No treatments to alter the course of acute painchronic pain

bull No ldquouniversalrdquo cure

bull Poor access to high quality care

ndash Need to improve existing treatment regimens

Sickle Cell DiseaseThe Challenge

bull High cost medical care

bull New health policy development impacting sickle cell population without advocacy due to lack of data

bull Few medical professions with expertise in sickle cell disease

bull Relatively high rate of deaths in young adult age group and continued decreased survival overall

Sickle Cell DiseaseThe Challenge

SCDAArsquos Mission

bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo

Clinical Care and Research Agenda

bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every

stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner

bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with

knowledge and expertise in sickle cell disease

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Increased Access to High Quality Health Care Across the Lifespan

Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications

Low-risk Profile Cures Accessible for All People with Sickle Cell Disease

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

bull Continued high morbidity and mortality

bull Few disease-modifying therapies

bull No treatments to alter the course of acute painchronic pain

bull No ldquouniversalrdquo cure

bull Poor access to high quality care

ndash Need to improve existing treatment regimens

Sickle Cell DiseaseThe Challenge

bull High cost medical care

bull New health policy development impacting sickle cell population without advocacy due to lack of data

bull Few medical professions with expertise in sickle cell disease

bull Relatively high rate of deaths in young adult age group and continued decreased survival overall

Sickle Cell DiseaseThe Challenge

SCDAArsquos Mission

bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo

Clinical Care and Research Agenda

bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every

stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner

bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with

knowledge and expertise in sickle cell disease

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Increased Access to High Quality Health Care Across the Lifespan

Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications

Low-risk Profile Cures Accessible for All People with Sickle Cell Disease

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

bull High cost medical care

bull New health policy development impacting sickle cell population without advocacy due to lack of data

bull Few medical professions with expertise in sickle cell disease

bull Relatively high rate of deaths in young adult age group and continued decreased survival overall

Sickle Cell DiseaseThe Challenge

SCDAArsquos Mission

bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo

Clinical Care and Research Agenda

bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every

stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner

bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with

knowledge and expertise in sickle cell disease

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Increased Access to High Quality Health Care Across the Lifespan

Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications

Low-risk Profile Cures Accessible for All People with Sickle Cell Disease

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

SCDAArsquos Mission

bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo

Clinical Care and Research Agenda

bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every

stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner

bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with

knowledge and expertise in sickle cell disease

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Increased Access to High Quality Health Care Across the Lifespan

Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications

Low-risk Profile Cures Accessible for All People with Sickle Cell Disease

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Clinical Care and Research Agenda

bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every

stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner

bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with

knowledge and expertise in sickle cell disease

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Increased Access to High Quality Health Care Across the Lifespan

Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications

Low-risk Profile Cures Accessible for All People with Sickle Cell Disease

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Increased Access to High Quality Health Care Across the Lifespan

Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications

Low-risk Profile Cures Accessible for All People with Sickle Cell Disease

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Challenges

Access to high quality care

bull Transitions of care

bull Access to information ndash disease self-management therapies advocacy and awareness

bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life

bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Sickle Cell Disease A Common AgendaTo Support a New Infrastructure

Better informed children and adults with SCD by providing access to information resources and support

Better informed providers by providing access to SCD resources and sickle cell expertise

Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Get Connected Initiative Purpose

bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy

bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment

bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Get Connected Initiative Purpose

bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease

bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources

bull Establish a network to support clinical research through community-based research navigators

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

What is ldquoGet Connectedrdquo

Information sharing network and patient-powered registry

ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait

ndash provides the storage of health information that enables patients to better navigate the health care system

ndash provides resources to access to disease-specific care and

ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM

Funding Opportunity Announcement HRSA-11-031

Awarded June 2015

Two-year project

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Grant Goals

bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care

bull Increase the use of sickle cell educatorcounselors (eg community health workers) and

bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Grant Activities

bull Focus on selecting CBOs that are servicing the sickle cell community

bull Identify educate and train CHWs to locate children and adults with SCD

bull Connect children and adults to services if not connected

bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Grant Activities

bull Educate CHWs about hydroxyurea

bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes

bull Measure hydroxyurea awareness in Get Connected

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

bull 26 sites

bull 20 states

bull 5 HRSA regions

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Development of GC IT Infrastructure

bull Global Visions Technologybull SCDAA

bull Development of patient enrollment formsndash Development of patient profiles

bull Development of system to aggregate data to insure de-identification

bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

The GC User Interface

bull Enrollment

bull Profile design and completion

bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

User Name

Password

Log In

Forgot Password

copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions

Privacy Policy | Terms and Conditions

Join the Program

Welcome to the ldquoGet Connectedrdquo

Registry

Role of Community Health Workers

1 Find Patients

2 Enroll in Get

Connected

3 Educate

4 Make Referrals to

EducatorCounselors for CC

Early Results

36 Community Health Workers trained

3152 children and adults with sickle cell disease enrolled

What about all of these other registries

bull Collaborate donrsquot duplicate

bull Complement

bull Broaden stakeholder base

bull Launch new initiatives

Include common stakeholders

Use common data elements terminology definitions

Acknowledgements

bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette

Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy

Browerbull National SCDAA HRSA Project

ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr

NORTHEAST REGION - Regions 2 amp 3

Pennsylvania SCDAA - Philadelphia Delaware Chapter

Childrens Sickle Cell Foundation

South Central PA Sickle Cell Council

New Jersey Sickle Cell Association of New Jersey

Delaware Tova Community Health Inc

New York The Sickle Cell Thalasemia Patient Network

Queens Sickle Cell Associaton

Maryland Maryland Sickle Cell Disease Association Inc

Virginia Sickle Cell Association Inc

Virgin Islands Virgin Islands

SOUTHEAST REGION - Region 4

Alabama Central Alabama Chapter of the Sickle Cell Foundation

Sickle Cell Foundation of Greater Montgomery

Georgia Sickle Cell Foundation of Georgia

North Carolina Piedmont Health Service and Sickle Cell Agency

Community Health Interventions amp Sickle Cell

South Carolina James R Clark Memorial Sickle Cell Foundation

Tennesse The Sickle Cell Foundation of Tennessee

Association of Sickle Cell Lower Chattahoochie Regional Support Group

MIDWEST REGION - Region 5

Illinois Sickle Cell Disease Association of Illinois

Indiana Martin Center Sickle Cell Initiative

Michigan Sickle Cell Disease Association of America MI

Ohio Ohio Sickle Cell and Health Association Inc

HEARTLAND REGION - Region 7

Missouri St Louis Sickle Cell Association

PACIFIC NORTWEST RGION - Regions 9 and 10

California Childrens Sickle Cell Foundation

Cayenne Wellness

Nevada Childrens Specialty of Nevada

Oregon Sickle Cell Anemia Foundation of Oregon

Stay Informed

Get Connected

Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)

Working towards healthier lives for children and

adults with sickle cell

Early Results

36 Community Health Workers trained

3152 children and adults with sickle cell disease enrolled

What about all of these other registries

bull Collaborate donrsquot duplicate

bull Complement

bull Broaden stakeholder base

bull Launch new initiatives

Include common stakeholders

Use common data elements terminology definitions

Acknowledgements

bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette

Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy

Browerbull National SCDAA HRSA Project

ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr

NORTHEAST REGION - Regions 2 amp 3

Pennsylvania SCDAA - Philadelphia Delaware Chapter

Childrens Sickle Cell Foundation

South Central PA Sickle Cell Council

New Jersey Sickle Cell Association of New Jersey

Delaware Tova Community Health Inc

New York The Sickle Cell Thalasemia Patient Network

Queens Sickle Cell Associaton

Maryland Maryland Sickle Cell Disease Association Inc

Virginia Sickle Cell Association Inc

Virgin Islands Virgin Islands

SOUTHEAST REGION - Region 4

Alabama Central Alabama Chapter of the Sickle Cell Foundation

Sickle Cell Foundation of Greater Montgomery

Georgia Sickle Cell Foundation of Georgia

North Carolina Piedmont Health Service and Sickle Cell Agency

Community Health Interventions amp Sickle Cell

South Carolina James R Clark Memorial Sickle Cell Foundation

Tennesse The Sickle Cell Foundation of Tennessee

Association of Sickle Cell Lower Chattahoochie Regional Support Group

MIDWEST REGION - Region 5

Illinois Sickle Cell Disease Association of Illinois

Indiana Martin Center Sickle Cell Initiative

Michigan Sickle Cell Disease Association of America MI

Ohio Ohio Sickle Cell and Health Association Inc

HEARTLAND REGION - Region 7

Missouri St Louis Sickle Cell Association

PACIFIC NORTWEST RGION - Regions 9 and 10

California Childrens Sickle Cell Foundation

Cayenne Wellness

Nevada Childrens Specialty of Nevada

Oregon Sickle Cell Anemia Foundation of Oregon

Stay Informed

Get Connected

Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)

Working towards healthier lives for children and

adults with sickle cell

What about all of these other registries

bull Collaborate donrsquot duplicate

bull Complement

bull Broaden stakeholder base

bull Launch new initiatives

Include common stakeholders

Use common data elements terminology definitions

Acknowledgements

bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette

Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy

Browerbull National SCDAA HRSA Project

ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr

NORTHEAST REGION - Regions 2 amp 3

Pennsylvania SCDAA - Philadelphia Delaware Chapter

Childrens Sickle Cell Foundation

South Central PA Sickle Cell Council

New Jersey Sickle Cell Association of New Jersey

Delaware Tova Community Health Inc

New York The Sickle Cell Thalasemia Patient Network

Queens Sickle Cell Associaton

Maryland Maryland Sickle Cell Disease Association Inc

Virginia Sickle Cell Association Inc

Virgin Islands Virgin Islands

SOUTHEAST REGION - Region 4

Alabama Central Alabama Chapter of the Sickle Cell Foundation

Sickle Cell Foundation of Greater Montgomery

Georgia Sickle Cell Foundation of Georgia

North Carolina Piedmont Health Service and Sickle Cell Agency

Community Health Interventions amp Sickle Cell

South Carolina James R Clark Memorial Sickle Cell Foundation

Tennesse The Sickle Cell Foundation of Tennessee

Association of Sickle Cell Lower Chattahoochie Regional Support Group

MIDWEST REGION - Region 5

Illinois Sickle Cell Disease Association of Illinois

Indiana Martin Center Sickle Cell Initiative

Michigan Sickle Cell Disease Association of America MI

Ohio Ohio Sickle Cell and Health Association Inc

HEARTLAND REGION - Region 7

Missouri St Louis Sickle Cell Association

PACIFIC NORTWEST RGION - Regions 9 and 10

California Childrens Sickle Cell Foundation

Cayenne Wellness

Nevada Childrens Specialty of Nevada

Oregon Sickle Cell Anemia Foundation of Oregon

Stay Informed

Get Connected

Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)

Working towards healthier lives for children and

adults with sickle cell

Acknowledgements

bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette

Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy

Browerbull National SCDAA HRSA Project

ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr

NORTHEAST REGION - Regions 2 amp 3

Pennsylvania SCDAA - Philadelphia Delaware Chapter

Childrens Sickle Cell Foundation

South Central PA Sickle Cell Council

New Jersey Sickle Cell Association of New Jersey

Delaware Tova Community Health Inc

New York The Sickle Cell Thalasemia Patient Network

Queens Sickle Cell Associaton

Maryland Maryland Sickle Cell Disease Association Inc

Virginia Sickle Cell Association Inc

Virgin Islands Virgin Islands

SOUTHEAST REGION - Region 4

Alabama Central Alabama Chapter of the Sickle Cell Foundation

Sickle Cell Foundation of Greater Montgomery

Georgia Sickle Cell Foundation of Georgia

North Carolina Piedmont Health Service and Sickle Cell Agency

Community Health Interventions amp Sickle Cell

South Carolina James R Clark Memorial Sickle Cell Foundation

Tennesse The Sickle Cell Foundation of Tennessee

Association of Sickle Cell Lower Chattahoochie Regional Support Group

MIDWEST REGION - Region 5

Illinois Sickle Cell Disease Association of Illinois

Indiana Martin Center Sickle Cell Initiative

Michigan Sickle Cell Disease Association of America MI

Ohio Ohio Sickle Cell and Health Association Inc

HEARTLAND REGION - Region 7

Missouri St Louis Sickle Cell Association

PACIFIC NORTWEST RGION - Regions 9 and 10

California Childrens Sickle Cell Foundation

Cayenne Wellness

Nevada Childrens Specialty of Nevada

Oregon Sickle Cell Anemia Foundation of Oregon

Stay Informed

Get Connected

Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)

Working towards healthier lives for children and

adults with sickle cell

NORTHEAST REGION - Regions 2 amp 3

Pennsylvania SCDAA - Philadelphia Delaware Chapter

Childrens Sickle Cell Foundation

South Central PA Sickle Cell Council

New Jersey Sickle Cell Association of New Jersey

Delaware Tova Community Health Inc

New York The Sickle Cell Thalasemia Patient Network

Queens Sickle Cell Associaton

Maryland Maryland Sickle Cell Disease Association Inc

Virginia Sickle Cell Association Inc

Virgin Islands Virgin Islands

SOUTHEAST REGION - Region 4

Alabama Central Alabama Chapter of the Sickle Cell Foundation

Sickle Cell Foundation of Greater Montgomery

Georgia Sickle Cell Foundation of Georgia

North Carolina Piedmont Health Service and Sickle Cell Agency

Community Health Interventions amp Sickle Cell

South Carolina James R Clark Memorial Sickle Cell Foundation

Tennesse The Sickle Cell Foundation of Tennessee

Association of Sickle Cell Lower Chattahoochie Regional Support Group

MIDWEST REGION - Region 5

Illinois Sickle Cell Disease Association of Illinois

Indiana Martin Center Sickle Cell Initiative

Michigan Sickle Cell Disease Association of America MI

Ohio Ohio Sickle Cell and Health Association Inc

HEARTLAND REGION - Region 7

Missouri St Louis Sickle Cell Association

PACIFIC NORTWEST RGION - Regions 9 and 10

California Childrens Sickle Cell Foundation

Cayenne Wellness

Nevada Childrens Specialty of Nevada

Oregon Sickle Cell Anemia Foundation of Oregon

Stay Informed

Get Connected

Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)

Working towards healthier lives for children and

adults with sickle cell

Stay Informed

Get Connected

Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)

Working towards healthier lives for children and

adults with sickle cell

Working towards healthier lives for children and

adults with sickle cell