How do I apply to the UDN?
Before applying to the UDN, it is important to discuss the study with a healthcare provider.
You will also need an email address and access to the Internet. If you do not have an email address and access to the Internet, you can request a paper application by calling 1-844-RING-UDN (1-844-746-4836). You will also need to ask your healthcare provider to write a study recommendation letter. The study recommendation letter must include:
- A summary of medical problems
- Date when symptoms were first noticed
- Previous diagnoses
- History of evaluations and tests
- History of treatments and medications
- Current medications
- Family history
- Healthcare provider’s diagnostic thoughts
- For pediatric patients, prenatal and birth history should also be provided.
Click here to see a set of example study recommendation letters.
Once you have the study recommendation letter, you can fill out an online application through our website, which we call the UDN Gateway. You will submit the study recommendation letter directly to this website. It should take less than 20 minutes to complete the online application. Please DO NOT email the application or study recommendation letter to the UDN.
When the UDN has received your application, you will receive a confirmation email. The UDN will let you know if more information is needed before your application can be reviewed.
Why do I need a study recommendation letter from my healthcare provider?
The UDN evaluation is only one part of your medical care. Your healthcare provider has been with you before the UDN evaluation and will likely continue to provide your medical care after the UDN evaluation. If you are accepted into the UDN study, the UDN will provide information from the evaluation to you and to your healthcare provider. Your healthcare provider will be responsible for your follow-up medical care.
I don’t have a primary healthcare provider and I don’t have health insurance. Can I still apply?
Yes, but you will need a study recommendation letter from a licensed healthcare provider. If you receive care in a clinic or other healthcare setting, you can discuss your application with a member of the medical team.
Having insurance is not a requirement to participate in this study. We aim to minimize your out of pocket costs as much as possible. If you are accepted into the UDN, talk with your clinical site representative about any possible charges you may incur.
More than one member of my family is affected by an undiagnosed condition. Do I need to submit an application for each person?
No, one application should be submitted even if there are multiple people affected in a family. This application should be for one individual, not the whole family (ex. “John Smith”, not “Smith Family”). You may attach multiple study recommendation letters to a single application.
What happens with my application?
Most likely, your application will be assigned to the UDN clinical site that is closest to where you live. Sometimes it will be assigned to a clinical site based on other factors. The assigned UDN clinical site will then contact you, typically within one month of application submission, to request additional information, such as:
- Medical records
- Laboratory studies
- MRI, X-ray, or CT images (can be sent on CD)
- Photographs or videos
- Pathology slides and reports
- For pediatric patients: growth curves
In order to help with the application review process, you can begin to collect these records now. However, please do not send this information until you receive specific instructions to do so from a UDN clinical site.
Please use only the specific contact information that you receive from the clinical site for UDN-related emails or to submit medical records. Please do not send these materials to the UDN Coordinating Center.
Once the UDN team has received all of the information necessary to review your application, they will review your application and make a decision about acceptance into the study. This review is expected to take about 6-8 weeks.
Can I choose which UDN clinical site I’m assigned to?
You may ask to be assigned to a specific UDN clinical site on your application if you want to. However, there is no guarantee that you will be assigned to that site.
If I apply, does that automatically mean that my application will be reviewed?
If I apply, does that automatically mean I can go to a UDN clinical site?
No. The UDN can only accept a small number of participants. The UDN team reviews each application very carefully to decide who can be accepted into the study. Even if you are not accepted, you might receive some useful feedback about your medical condition.
How will I find out the UDN’s decision?
We will contact you and your referring provider.