NIH Data Sharing with dbGaP

In accordance with the NIH Data Sharing Policy, the Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS) has selected the database of Genotypes and Phenotypes (dbGaP) as the Rare Diseases Clinical Research Network (RDCRN) Federal Data Repository.  

Access to individual-level data including phenotypic data tables and genotypes data from RDCRN studies is available through dbGaP by controlled access.  Summaries of studies and the original study forms are available to the public. Descriptions of the dbGaP system are available in Pub Med Central and the NCBI Bookshelf.

Per NIH guidelines, the RDCRN sends all data collected to dbGaP. To facilitate this process, the RDCRN DMCC submits the data to dbGaP on behalf of the Principal Investigator in accordance with the approved   RDCRN Data Sharing Policy.

In addition, some consortia have their own data use policies. View the   RDCRN Consortium Data Use Policies.

RDCRN Studies with Data Available Through dbGaP