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International AD Research Funder Consortium (IADRFC)

Focus: • On information/ data sharing• Develop framework of partnerships for

possible joint funding opportunities• Develop of standard templates• Move to galvanize Alzheimer’s research to

influence the international research agenda.

Alzheimer’s Association **Alzheimer’s Australia Dementia Research FoundationAlzheimer Drug Discovery FoundationAlzheimer’s Research UK **Alzheimer Society CanadaAlzheimer’s Society UKCenters for Disease Control and PreventionDepartment of Veterans AffairsNational Institutes of Health **Patient-Centered Outcomes Research InstituteUS Army Medical Research and Materiel CommandNational Health & Medical Research Council (Australia)The Ellison Medical FoundationInternational Institute of Molecular and Cell Biology (Warsaw, Poland)Cure Alzheimer's FundGeoffreyBeene FoundationThe Weston Brain instituteAlzheimer’s Czech Republic

BrightFocus FoundationCanadian Institute of Health Research (CIHR) FAPESP (Sao Paulo Research Foundation) Fidelity Biosciences Research Initiative Wellcome TrustAlzheimer’s Foundation of AmericaFrance national Research Foundation on Alzheimer’s and Related Diseases/Joint Programme of NeurodegenerationAlzheimer NederlandAlzheimer’s Disease International Alzheimer’s France Alzheimer’s EuropeAmerican Federation for Aging ResearchThe Ministry of Health, Labor and Welfare Israeli Ministry of HealthMedical Research Council (Neurology and Neurodegenerative diseases Neurosciences and Mental Health Board)

International AD Research Portfolio (IADRP) Partners

Organizations with data committed to IADRP: Administration on AgingAgency on Healthcare Research and QualityAlzheimer’s AssociationAlzheimer’s Australia Dementia Research FoundationAlzheimer Drug Discovery FoundationAlzheimer’s Research UKAlzheimer Society CanadaAlzheimer’s Society UKCenters for Disease Control and PreventionDepartment of Veterans AffairsNational Institutes of HealthPatient-Centered Outcomes Research InstituteUS Army Medical Research and Materiel CommandNational Health & Medical Research Council (Australia)The Ellison Medical FoundationInternational Institute of Molecular and Cell Biology (Warsaw, Poland)Cure Alzheimer's FundGeoffrey Beene FoundationUS States Funding Research (Texas, California, Wisconsin, Oregon, Virginia)

Organizations in discussion re: IADRP: BrightFocus FoundationCenters for Medicare & Medicaid Services (CMS)Canadian Institute of Health Research (CIHR) U.S. Food & Drug Administration (FDA)FAPESP (Sao Paulo Research Foundation) Brain Research Foundation US States Funding Research (Florida, Connecticut, Nevada, Arizona)

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GAAIN is the first Global Data Network for Alzheimer’s

Collaborative effort to provide researchers around the globe with access to a vast repository of Alzheimer’s research data.

Requires central infrastructure and active participation of Data Partners (Data Holders).

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GAAIN Components

Federation Infrastructure

Common Data Model

Common Terminologies

Data Mapping Technology

Common User Interface

(IADRP/ CADRO)

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Infrastructure

Mapping tool

Data Model

• Common UI• Data federation

engine

• Map source data to common schema

• Enforce terminology and coding standards (IADRP/ CADRO)

• Common schema• Common definitions• Common encoding

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RID .. PTGENDER PTDOB MMSETOT

RID .. EXAMDATE GENDER DOB MMSCORE

XADC XID SEX BIRTHYR MMSE

AIBL

AD Data Consortium X

Data Heterogeneity

ADNI

PTID .. MF BIRTHDATE APOE

AD Data Consortium Y

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Transforming Data

• Local schemas

• Local termsPartner

s

• Common schema

• Common terms

GAAIN

Data Mapping

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Global Partners and Affiliates