NHLBI's SNP Health Association Resource (SHARe) Project: A New Model for Access to Genetic Epidemiology Data

The National Heart, Lung, Blood Institute (NHLBI), in its mission to promote the prevention and treatment of heart, lung, blood, and sleep disorders, is among the leaders of a novel project that will help spur scientific achievement and collaboration through the sharing of data. The SNP Health Association Resource (SHARe) project involves the sharing of phenotype and genotype data from some of NHLBI's large population-based studies. High density SNP genotyping (>500,000 SNPs/individual) has been completed on 9300 participants from the Framingham Heart Study, and will be completed on participants of the Multi-Ethnic Study of Atherosclerosis (MESA), Women's Health Initiative (WHI), and SHARP (SHARe Asthma Resource Project).

Genotyping results and the existing 10,000+ phenotypes from the Framingham Heart Study are currently available to the scientific community. Applications may be submitted through dbGaP (database of Genotypes and Phenotypes), created by the National Center for Biotechnology Information (NCBI). Data requests are administratively reviewed by the NHLBI Data Access Committee (DAC) which comprises NHLBI staff experts in the heart, lung, blood, and sleep fields. Data are downloaded by the applicant after the application has received DAC approval.

The application process to request SHARe data will be described. Special emphasis will be given to the review of the Data Use Certification, a document that defines terms of use for the data. Information about barriers to access encountered, problems/deficiencies in submitted applications, and the importance of the documents required for the application will also be discussed. Finally, metrics of the review process results will be presented.