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RDCRN Contact Registry

The Rare Diseases Clinical Research Network (RDCRN) is a national network of top rare diseases researchers, powered by patient partnerships and funded by the National Institutes of Health. The RDCRN Contact Registry collects and stores the contact information of people who want to participate in RDCRN-sponsored research or learn more about our research. It connects patients with researchers in order to advance rare diseases research. Future research may produce helpful information for those with rare diseases.
A white contact card appears inside a teal circle

What is the RDCRN Contact Registry?

A contact registry is a database that collects and stores information about patients diagnosed with specific diseases. The RDCRN Contact Registry connects interested patients to clinical trials (research studies) underway within the RDCRN. It also allows the RDCRN and RDCRN-affiliated consortia (research groups) and patient advocacy groups to share information about their research with interested patients and others.

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Why should I join the RDCRN Contact Registry?

Joining the RDCRN Contact Registry allows you to connect with the larger RDCRN community. You will learn about opportunities to participate in RDCRN research and receive information about our work. You may be invited to join a research study. You could be invited to serve as a control subject for a study (part of a comparison group) or respond to a survey. You can share your contact information with RDCRN-affiliated consortia and patient advocacy groups. You can also subscribe to the RDCRN newsletter to learn more about our work.

The person icon from the RDCRN logo in white is inside of a teal circle

What is the Rare Diseases Clinical Research Network (RDCRN)?

The RDCRN is a research network funded by the National Institutes of Health (NIH). It fosters research to better understand, diagnose, and treat rare diseases. Our 19 consortia—teams of scientists, physicians, and patients—each study a group of related rare diseases. New consortia dedicated to studying different diseases can apply to join the network at the start of each five-year funding cycle. Established by Congress under the Rare Diseases Act in 2002, the RDCRN is an initiative of the Division of Rare Diseases Research Innovation at the NIH’s National Center for Advancing Translational Sciences (NCATS).

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How is the RDCRN advancing rare diseases research?

RDCRN consortia are studying nearly 200 rare diseases at more than 270 sites in the United States and around the world. We host the tools and services needed to make large-scale research studies possible. We also directly interact with patients and their advocates and train new investigators (scientists and doctors) in rare diseases research.

 

 

Current Number of Participants

3,952

Countries Represented

83

Participants by Sex

Participants by Role

Participants by Race

American Indian or Alaska Native 15 (< 1%)
Asian 121 (3.1%)
Black or African American 60 (1.6%)
More than 1 race 117 (3.0%)
Native Hawaiian or Other Pacific Islander 2 (< 1%)
Prefer not to answer 56 (1.5%)
Unknown 51 (1.3%)
White 3,427 (89.0%)