Who's eligible to participate
In order for your child to be considered for this national study, applicants must:
- Have a condition that remains undiagnosed despite thorough evaluation by a healthcare provider
- Have at least one objective finding (i.e. verifiable indication of disease or injury)
- Agree to have de-identified information about the patient – along with biomaterials – processed, catalogued and shared with additional research sites beyond the Undiagnosed Diseases Network as needed
How patients and families apply
Before applying to the Undiagnosed Disease Network (UDN), parents/guardians should discuss the study with their child's healthcare provider. Interested parents can apply online at the UDN Gateway or request a paper application by calling 1-844-RING-UDN.
To be considered for this study, a healthcare provider must write a letter recommending your child's participation. The letter should include:
- A summary of your child's medical problems, along with dates when symptoms were first noticed
- A history of your child's evaluations, tests, treatments and/or medications, along with any previous diagnoses
- A family medical history, as well as your child's prenatal and birth history
- A list of any current medications your child is taking
- The healthcare providers' diagnostic impressions of your child and their symptoms
Once you have the recommendation letter, you can apply online at the UDN Gateway and attach the letter. During the application process, you may request that your child's case be assigned to a specific geographic area or participating hospital, but there is no guarantee you will be assigned to that site.
Please note: Only a small percentage of applications will be accepted for this study. However, even if your child is not accepted, you may still receive useful feedback from the study's clinical team with recommendations about your child's medical condition and suggestions about how best to move forward.
If your child is accepted into the UDN study, you will be assigned a study location partner and will work with staff there to determine possible dates for a 2- to 5- day visit to the clinical site for your child's study-specific medical and research evaluation.
In order to apply your patient, you will first need their approval. Once they confirm their interest, reference the UDN's information for providers document and an example of a recommendation letter. Please request that the patient to complete their initial application.
Read frequently asked questions about the UDN.
To learn more about the UDN, application and evaluation process, visit the Undiagnosed Disease Network website.