NEGCEducation Outreach Workgroup

AGENDA

• Welcome and introductions• GEMSS overview– Current status of the site – Data from usage

New Members

• Chanika Phornphutkul, MD Brown School of Medicine/RI Hospital

• Patricia (Trish) Kavanagh, MD Boston Medical Center (sickle cell program)

• Phillipa Sprinz, MD Boston Medical Center (pediatric hematologist)

• Wendy Erler Regional Business Manager, Shire • Erica Stelmach, MS, CGC Prenatal Diagnosis Program,

DHMC• Anyone else?

Returning Members

• Leah Burke, MD, Chair VT Regional Genetics Center• Bev Burke, MSW CT Department of Health• Ann Dillon, MEd, OTR/L University of New Hampshire• Christine Giummo, CGC University of Vermont• Cindy Ingham, RN VT Department of Health• Fay Larson, RN, MS CT Public Health Laboratory• Ellie Mulcahy, RNC ME Department of Health & Human

Services • Holly Tutko, MS University of New Hampshire• Delores Williams-Edwards Family member

GEMSS Overview

• Current status of the site • Data from usage

http://www.gemssforschools.org/

GEMSS ImplementationFebruary 2, 2012 through August 31, 2012

• Since February 2, 2012...• 7,748 visits and 6,322 unique users, • Average time on site is 2:57, with users visiting an average of

4.2 pages per visit• Bounce rate is 49.2%• New visitors make up 81.4% of visits, returning visitors, 18.6%• Ratings of "Easy (4) or Very Easy (5)" for Website components

(N=130) Site Layout: 90% Home Page: 92% Topic Tabs/Headings: 95% Links within Text: 90% Terminology/Vocabulary: 93%

Usage and Feedback

• Hoping to find specific information on the site? (N=129)– Yes: 47%, No: 53%

• Able to find information they were looking for? (N=93)– Most or All: 58%– Some: 29%– None: 13%

• Would they use the website in the future to find further information about educating children who have genetic conditions? (N=125)– Agree: 90%– Neutral: 4%– Disagree: 6%

• Recommend the website to others? (N=129)– Yes: 96%, No: 4%

International GEMSS Access Map

United States GEMSS Access Map

Who is Using GEMSS?

Parents, school nurse, otherAdvocate, Special Education TeacherGenetic Counselor, Gereal Ed-ucation, College Faculty, Par-ent GroupIndividual with Genetic condi-tion, Special Educator Coor-dinator, OT, PT, S/LT

AGENDA

Dissemination -What we’ve done, what we want to do • Leah – American College of Medical Genetics Poster• Christine – Williams Syndrome group, FAHC Conference

for Vermont School Nurses, Maine School Nurses, NEGC• Bev – Connecticut Statewide School Nurse Supervisors,

CT Public Health Association• Outreach poster – View new designs• New ideas

• Workshops/webinars on how to use the website• Other ideas

AGENDA

• Conditions– New conditions in process• Prader-Willi• Angelman• Neurofibromatosis

– Keeping current with content– Soliciting help with content from the public / how

to vet the information

Conditions

• New conditions– Prader-Willi syndrome– Angelman syndrome– Neurofibromatosis– Others

Page Views from 2/2/12- 8/31/12

22q deletion

Down syndrome

Fragile X

Williams syndrome

PKU

MCAD

VLCAD

Undiagnoised/Other

NF1

Prader Wilii

FAOD

Angleman syndrome

AGENDA

• Evaluation – what would it look like

AGENDA

• New ideas for enhancing the site– Transition – Child pages, including kids’ art and quotes – Ann

Dillon to talk– Videos– Case studies– Other ideas

IDEAS OR QUESTIONS