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Apply to Stanford Center for Undiagnosed Diseases Network

Thank you for your interest in the Stanford Center for Undiagnosed Diseases, a multi-disciplinary research center focused on diagnosing rare and unknown diseases. Should you or someone you know be interested in our services please review the requirements and application guidance below. Please note we are a research program and currently unavailable for traditional clinic services. All applicants should continue with all standard medical care during the time of application to our program. In addition to the clinical referral by a clinician of your choice, the standard application includes a 15-30 minute online application and is provided in English. Should you require language translation services, in-print options, or further assistance for your application, you may contact the Undiagnosed Diseases Network Coordinating Center for assistance at 1-844-746-4836 (1 844 Ring UDN).

We have significant numbers of applicants and not all cases can be accepted. For any questions, please read FAQs.

Eligibility Criteria

INCLUSION CRITERIA:

  1. The applicant has a condition that remains undiagnosed despite thorough evaluation by a healthcare provider and has at least one objective finding.
  2. The applicant (or legal guardian) agrees to the storage and sharing of information and biomaterials in an identified fashion amongst the UDN centers, and in a de-identified fashion to research sites beyond the network.
  3. Applicants unable to consent can be enrolled.
  4. Applicant has a rare condition without diagnosis which explains the objective findings.
  5. Applicant must be able to travel safely to the UDN clinical site of acceptance.

EXCLUSION CRITERIA:

  1. The applicant has a diagnosis that explains the objective findings.
  2. Review of the records suggests a diagnosis and further evaluation by the UDN is deemed unnecessary.
  3. The UDN is unlikely to improve on the comprehensive workup the applicant already received.
  4. The applicant is too seriously ill to travel safely to the UDN site and telemedicine/distance consult is not possible or appropriate.

Read more about eligibility and our research protocol.

A twelve minute video peek into our network & patients by CBSNews 60 MINUTES.

UDN Participants

Patients

If you or your child is suffering from an undiagnosed and rare condition, we may be able to help. To apply to our research program:

  1. Ask your physician for a letter of referral. Only formal referrals will be considered.
  2. Enter your online application here. You may request Stanford as your site of preference.
  3. Once your application is received, you will be contacted for ALL medical records. These can be received by mail or via electronic upload. Please be prepared accordingly.
  4. Allow time for us to conduct in-depth clinical case reviews with our team of diverse and expert physicians. On average this takes approximately 6-12 weeks. You will be contacted when your case review is complete.

Physicians

If your patient has a rare, undiagnosed condition and you seek referral for in-depth clinical study, we may be able to help. Please note we are a research center and unable to provide standard of care clinical consults at this time. If you have specific medical questions regarding eligibility please contact us to arrange a time to speak with our Lead Research Coordinator or Medical Directors.

To apply your patient to our research program:

  1. Discuss our program with your patient; we will need their approval to participate.
  2. Write a detailed letter of referral using the following instructions and template
  3. Request the patient to complete their initial application here where they will enter their information and submit your letter of referral. You may assist them in this process or you may contact our Coordinating Center at 1-844-746-4836 (1 844 Ring UDN) for application assistance. They may request Stanford as the site of preference or another site as desired.
  4. Please allow time for us to conduct in-depth clinical case reviews. On average this process takes 6-12 weeks. You may be asked to consult with our clinical team as the physician of record. We will contact you and your patient when the review is completed.

Family

Someone in your family is undiagnosed. Apply here

It's hard to watch someone you care about struggle to find answers to their medical questions. If you know of someone who might benefit from our program, have them ask their doctor. If a family member has already been accepted and you've been asked to participate in the Undiagnosed Diseases Network as a family member in the discovery of disease process you are in unique position. Often the key for unlocking new genetic diseases is to study not only the person affected, but the biologically related family members as a whole. Please consider assisting your family member in their diagnostic journey. As a participating family member you will be asked to:

  1. Consent to genetic testing.
  2. Provide basic personal and medical history.
  3. Obtain your genetic sample and follow shipping instructions.

Thank you for helping.