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Data Availability

Accessing UDN Data

The UDN Data Management Coordinating Center (DMCC) facilitates the dissemination of de-identified data to NIH-designated controlled-access repositories and other pertinent resources on behalf of network sites.

Genomic and phenotypic data are made accessible to the scientific community through dbGaP, with new data submissions occurring annually. To explore data available in the latest release, visit the UDN study page in dbGaP. Individuals interested in accessing UDN data through dbGaP should submit a data access request (DAR). Detailed instructions for this process can be found on the NIH Scientific Data Sharing website: How to Request and Access Datasets from dbGaP.

Variant classifications are shared publicly through ClinVar, with new submissions occurring quarterly. In addition to variant level information, submissions also include HPO terms and diagnoses identified in the UDN participant(s) with the variant. To browse or search variant classifications submitted by the UDN, visit the UDN submitter page in ClinVar.