Premium
FTS‐01‐02: The global Alzheimer's association interactive network (GAAIN)
Author(s) -
Toga Arthur W.,
Neu Scott,
Crawford Karen,
Bhatt Priya,
Ashish Naveen
Publication year - 2015
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2015.07.023
Subject(s) - incentive , association (psychology) , data sharing , computer science , voluntary association , join (topology) , data science , medicine , psychology , political science , alternative medicine , mathematics , pathology , combinatorics , law , economics , microeconomics , psychotherapist
Background: There is an urgent need for validated and novel prognostic and diagnostic markers in preclinical and prodromal Alzheimer’s disease (AD). Biomarker and clinical studies are not yet linked to each other such that the potential of these studies is not fully used. The European Medical Information Framework for AD (EMIF-AD, www.emif.eu) was set-up to facilitate studies on predementia AD by enabling optimal use of existing data cohorts. The objectives of the EMIF-AD platform are to provide a catalogue with information on study characteristics of cohort studies, to provide a database structure that can be used to pool and store data from different cohorts, and to provide access to data from electronic health registries (EHR). Methods: Cohort studies on aging or Alzheimer’s disease were asked to provide information on study design and procedures in a web-based catalogue. A search tool was developed to select cohorts that could provide data for specific research questions. An ontology for data pooling was defined in WebProt eg e. Using the tranSMART platform, an infrastructure for data storage, data access and data pooling was set-up. With the Jerboa tool, access to data of 18 million subjects from 14 EHRs was provided. Results:The catalogue includes currently information on 40 cohort studies. These cohorts give access to data of 30.000 subjects with normal cognition, 3000 with subjective complaints, 12.000 with MCI and 3000 with AD. In these cohorts data have been collected on CSF markers (n1⁄45000), MRI scans (n1⁄410.000), DNA (n1⁄416.000) and plasma or serum markers (n1⁄48000). In tranSMART a selection of data from 5 cohorts have been pooled. Prevalence estimates of preclinical AD, prodromal AD, and AD type dementia from research cohorts and EHRs have been made. Conclusions: The EMIF-AD platform will become a useful tool to facilitate data access, data pooling and collaborative studies on early AD. The platform is open for any cohort to join.