The UDN is a research study funded by the National Institutes of Health Common Fund. The UDN is made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases.
See instructions on how to refer a patient.
Thank you for considering participation. Please read instructions.
Maybe. The site designation depends on several factors including location and interest. You can request the Stanford site which will be taken into consideration.
If you are accepted to the UDN, you will first be contacted and consented to participate in the study. We may also consent members of your family. We will then collect blood samples for genetic testing as well as arrange an in person visit for clinical evaluation and testing. The length of visit and tests to be conducted will vary per case. You will be able to discuss your specific case with the Lead Study Coordinator should you be accepted. Read more about what our research protocol includes.
Please allow us at least 30 days to review your initial application. If it has been more than this, yes. Contact the UDN Coordinating Center by emailing UDN@hms.harvard.edu or by calling 1-844-RINGUDN (746-4836)
Contact the UDN Coordinating Center by emailing UDN@hms.harvard.edu or by calling 1-844-RINGUDN (746-4836)
No. We will do everything possible to identify a diagnosis, but cannot guarantee this outcome. However, we will continue to review your case as new information arises, and it's possible to receive diagnosis later.
You must be able to travel to one of the participating sites. We can work with you to minimize travel concerns.
Yes. Cases will not be considered without a solid letter of recommendation for participation in the program.
Our program is designed to be research and only research participants are eligible to participate. For strictly clinical care you may reach out to Stanford's Lucile Packard Children's Hospital and Stanford Health Care.