Sustainability
The Future of the UDN
The NIH will continue to support the NIH UDP clinical site and has funded a Data Management Coordinating Center (DMCC) to provide coordination, infrastructure, and data management to a network of Diagnostic Centers of Excellence. Although these clinical sites will not receive direct NIH funds, they will have the opportunity to apply for small amounts of funds each year administered by the DMCC to support site coordination associated with data sharing and small, exploratory research projects needed to facilitate a participant’s diagnosis. UDN clinicians and researchers are committed to the mission of the UDN and to providing answers for patients and families. While the UDN will likely look different in the future, we are actively seeking additional funding for clinical sites and core laboratories from sources outside the NIH. The Data Management Coordinating Center (DMCC) will continue to be a source of stability and centralized communication for UDN participants.
Modifications will be made as we transition to the next phase of the UDN. Some individual clinical sites have paused accepting new participants (please visit our UDN Sites page for more details). However, new applications to the UDN are still being accepted at this time, and all accepted participants will receive complete evaluations. Please see the FAQs below for more information.
During this transition, we will make changes to the UDN application and evaluation process for individuals applying and enrolling. We hope many of these changes will make the process easier for applicants, participants, and clinical sites. Some changes may include reducing the number of medical records collected, having testing done closer to the participant’s home, and increasing the use of telehealth. In addition, clinical tests and procedures likely will be billed through health insurance, though uninsured and underinsured individuals may continue to participate. We will work with local and national partners to assist in supporting reimbursement for participant out-of-pocket expenses, including medical costs not covered by insurance and travel costs.
Throughout this transition, the UDN Data Management Coordinating Center & UDN Helpdesk will support you if you have questions or need assistance (1-844-846-4836 or udn@hms.harvard.edu).
Q&A
Participant Questions
Q. Will I still be able to contact my UDN clinical site team if I have questions regarding my case?
Yes, you will still be able to contact your UDN clinical site team with questions. If you do not have contact information for your clinical site coordinator, please contact the Helpdesk at the UDN Data Management Coordinating Center by phone (1-844-846-4836) or email (udn@hms.harvard.edu).
Q. Will there be any changes in the way my data and samples are stored and shared?
The UDN will continue to store clinical and research data and samples for all participants. The UDN data sharing policies will remain consistent with the consent form that was signed when enrolling in the study. If you have questions about data storage policies, please contact your clinical site coordinator.
Q. My test results are pending. Will the results still be communicated to me?
Yes, all test results, including genetic testing results, will be communicated to participants. If you are still waiting for test results and you expected to hear back by now, please reach out to your site coordinator or the Helpdesk at the UDN Data Management Coordinating Center by phone (1-844-846-4836) or email (udn@hms.harvard.edu).
Q. I was recently accepted to the UDN. Will I still receive a complete evaluation?
Yes, all accepted participants will have complete evaluations and tailored testing. The type of testing performed is determined on a case-by-case basis.
Q. My site’s website says they have paused accepting new participants. Does this mean they are closing permanently?
No, this does not necessarily mean the site is closing. Even if the site is not accepting new participants, they are still evaluating their currently enrolled participants. If a site’s status changes further, we will provide updated information on the website. You can always reach out to your site coordinator or the Helpdesk at the UDN Data Management Coordinating Center (1-844-846-4836 or udn@hms.harvard.edu) if you have further questions.
Q. How can I request my sequencing data and/or documents?
Data can be requested through your sequencing lab. Sequencing for UDN participants is performed through one of two labs: HudsonAlpha and Baylor Genetics. The name of the lab will be on your sequencing report. If you need help with this or are unsure of which lab to contact, you can contact your clinical site coordinator. If you do not have contact information for your clinical site coordinator, please contact the Helpdesk at the UDN Coordinating Center by phone (1-844-846-4836) or email (udn@hms.harvard.edu).
Q. I am still undiagnosed. Will my data continue to be re-evaluated over time?
It is our goal to continue to look at data from undiagnosed patients over time. This may be in the form of a central analysis, an analysis at individual clinical sites, or through referrals to other research programs. Given that the next phase of the UDN will not start until July 2023, these plans are currently under development. If you have questions about your individual case, please contact your site coordinator or the Helpdesk at the UDN Data Management Coordinating Center by phone (1-844-846-4836) or email (udn@hms.harvard.edu).
Applicant Questions
Q. Can I still apply to the UDN?
Yes, you can still apply to the UDN. You will be assigned to a clinical site that is continuing to review applications. All applicants accepted into the UDN will receive a full evaluation. Please visit our Map of UDN Sites and How to Apply pages for more information.
Q. Will my application be delayed?
Historically, the application review process has taken 6-8 weeks. Our goal is to continue to meet this timeline.
Q. What is the cost for participating if accepted?
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 coordinator about any possible charges you may incur and resources that may be available.
Updated: July 13, 2022