0
1
International AD Research
Funder Consortium (IADRFC)
Focus:
• On information/ data sharing
• Develop framework of partn...
International AD Research Portfolio
(IADRP) Partners
Organizations with data committed to IADRP:
Administration on Aging
A...
3
GAAIN is the first Global Data
Network for Alzheimer’s
Collaborative effort to
provide researchers
around the globe wit...
4
GAAIN Components
Federation
Infrastructure
Common Data Model
Common
Terminologies
Data Mapping
Technology
Common User
I...
5
Infrastructure
Mapping tool
Data Model
• Common UI
• Data federation
engine
• Map source data to
common schema
• Enforc...
6
RID .. PTGENDER PTDOB MMSETOT
RID .. EXAMDATE GENDER DOB MMSCORE
XADC XID SEX BIRTHYR MMSE
AIBL
AD Data Consortium X
Da...
7
Transforming Data
• Local schemas
• Local terms
Partners
• Common schema
• Common terms
GAAIN
Data Mapping
8
Global Partners and Affiliates
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Global Dementia Legacy Event: Dr. Maria C. Carrillo

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Session Three: To explore ways in which we can increase investment in innovation. Part 2 presents a case study of innovation across the globe and the need to continue global collaboration

Dr. Maria C. Carrillo, Vice President, Alzheimer’s Association US

Published in: Health & Medicine
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  • Working with partners who have collected data and others who have developed standards we are building the necessary infrastructure.
  • We develop a common data model and common terms and codes to be used by all participating sites. Common terminologies are part of the basis along with a data dictionary that captures which terminology code has been selected for each data element using coded terms. Through the dictionary and data model can be used to help guide the process of mapping and transforming data from local sources into the common model/terms and to ensure data validity. Once data are sharing a common model and terms, searching across data sources becomes possible
  • Make a fourth table with different variable names and call it (
  • Use of common data models and allows heterogeneous data to be combined.
    A global common model offers a single, authoritative data source that provides consistent data representation though all source databases.
  • The following groups are partnering with gaain: LONI, NeuGRID, ADNI, AIBL, DIAN, EMIF, NACC, and the Critical Path Institute,
  • Transcript of "Global Dementia Legacy Event: Dr. Maria C. Carrillo"

    1. 1. 1 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 Foundation Alzheimer Drug Discovery Foundation Alzheimer’s Research UK ** Alzheimer Society Canada Alzheimer’s Society UK Centers for Disease Control and Prevention Department of Veterans Affairs National Institutes of Health ** Patient-Centered Outcomes Research Institute US Army Medical Research and Materiel Command National Health & Medical Research Council (Australia) The Ellison Medical Foundation International Institute of Molecular and Cell Biology (Warsaw, Poland) Cure Alzheimer's Fund GeoffreyBeene Foundation The Weston Brain institute Alzheimer’s Czech Republic BrightFocus Foundation Canadian Institute of Health Research (CIHR) FAPESP (Sao Paulo Research Foundation) Fidelity Biosciences Research Initiative Wellcome Trust Alzheimer’s Foundation of America France national Research Foundation on Alzheimer’s and Related Diseases/ Joint Programme of Neurodegeneration Alzheimer Nederland Alzheimer’s Disease International Alzheimer’s France Alzheimer’s Europe American Federation for Aging Research The Ministry of Health, Labor and Welfare Israeli Ministry of Health Medical Research Council (Neurology and Neurodegenerative diseases Neurosciences and Mental Health Board)
    2. 2. International AD Research Portfolio (IADRP) Partners Organizations with data committed to IADRP: Administration on Aging Agency on Healthcare Research and Quality Alzheimer’s Association Alzheimer’s Australia Dementia Research Foundation Alzheimer Drug Discovery Foundation Alzheimer’s Research UK Alzheimer Society Canada Alzheimer’s Society UK Centers for Disease Control and Prevention Department of Veterans Affairs National Institutes of Health Patient-Centered Outcomes Research Institute US Army Medical Research and Materiel Command National Health & Medical Research Council (Australia) The Ellison Medical Foundation International Institute of Molecular and Cell Biology (Warsaw, Poland) Cure Alzheimer's Fund Geoffrey Beene Foundation US States Funding Research (Texas, California, Wisconsin, Oregon, Virginia) Organizations in discussion re: IADRP: BrightFocus Foundation Centers 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)
    3. 3. 3 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).
    4. 4. 4 GAAIN Components Federation Infrastructure Common Data Model Common Terminologies Data Mapping Technology Common User Interface (IADRP/ CADRO)
    5. 5. 5 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
    6. 6. 6 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
    7. 7. 7 Transforming Data • Local schemas • Local terms Partners • Common schema • Common terms GAAIN Data Mapping
    8. 8. 8 Global Partners and Affiliates
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