182236 NHLBI's SNP Health Association Resource (SHARe) Project: A New Model for Access to Genetic Epidemiology Data

Sunday, October 26, 2008

Mona Pandey, MPH , Division of Prevention and Population Sciences/Epidemiology Branch, National Heart, Lung, Blood Institute (NHLBI), Bethesda, MD
Cashell Jaquish, PhD , DPPS/EB, National Heart, Lung, Blood Institute, Bethesda, MD
George Papanicolaou, PhD , DPPS/EB, National Heart, Lung, Blood Institute, Bethesda, MD
Christopher O'Donnell, MD , Framingham Heart Study/NHLBI, Framingham, MA
Richard Fabsitz, PhD , DPPS/EB, NHLBI, Bethesda, MD
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.

Learning Objectives:
Describe a program that aims to share genotype and phenotype data from population-based studies.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am employed by NHLBI and am the Data Access Committee (DAC) Coordinator for the NHLBI SHARe project.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.