NIH Data Sharing

In accordance with the NIH Data Sharing Policy, data generated through the Rare Diseases Clinical Research Network is deposited in an Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), and NIH-sanctioned data repository on behalf of the Principal Investigator.

Many studies have data available through the database of Genotypes and Phenotypes (dbGaP) and access to individual-level data including phenotypic data tables and genotype data from RDCRN studies is available by controlled access.  Summaries of studies and the original study forms are available to the public.

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

RDCRN Studies with Data Available Through dbGaP