UDN FAQs

How does the UDN make sure their research is fair, safe, and ethical?

The UDN follows rules and laws to keep people safe when they do research. A special group, called the Institutional Review Board, reviews the UDN’s research to make sure it protects the rights and safety of the people who participate. The UDN protects privacy and makes sure people understand what they agree to.

Participants who join the UDN often have not been able to get a diagnosis for a long time. The UDN explains the difference between research and regular medical care, so people know what to expect.

The UDN also works with the Undiagnosed Diseases Network Foundation and its PEER group, which includes participants and caregivers. The UDNF and PEER help the UDN make the best choices about how they do research, talk to participants, and share information.

To learn more about the UDN and see a full list of FAQs, please visit: UDN FAQs.