Safety Information & Precautionary Measures
What precautionary measures is the Stanford Center for Undiagnosed Diseases (CUD) taking in response to the COVID-19 epidemic?
The safety and well-being of the Stanford CUD participants and employees is our top priority. We have implemented precautionary measures in alignment with the most up-to-date university, county, state and federal guidance. At this time the Stanford CUD is taking the following steps:
- All in-person and on-site research activities have been limited.
- All in-person evaluations and sample collection have been limited.
- All staff are limiting on-campus work.
- All research related travel for participants and employees has been postponed.
- All research samples have been safely and securely stored.
What precautionary measures can I take?
COVID-19 related resources are listed at the bottom of this page and will be updated on an ongoing basis.
To stay up-to-date on current status of approved vaccines and vaccine eligibility in California, please refer to the following resources.
Any questions about vaccine eligibility or administration should be directed to your pediatrician or primary care doctor.
|Centers for Disease Control||https://www.cdc.gov/coronavirus/2019-ncov/vaccines/index.html|
|California Vaccination Information||
|CA Department of Developmental Resources||https://www.dds.ca.gov/corona-virus-information-and-resources/vaccine-testing/|
|Stanford Health Care Vaccine Information||https://stanfordhealthcare.org/discover/covid-19-resource-center/patient-care/safety-health-vaccine-planning.html|
|Stanford Children’s Health Vaccine Information||https://www.stanfordchildrens.org/en/landing/covid-vaccine|
Is the Stanford CUD accepting applications?
Yes, the Stanford CUD is accepting applications.
How should I submit an application to the Stanford CUD?
You can find more information on how to apply to the UDN here: https://undiagnosed.hms.harvard.edu/apply/
What if I recently mailed an application to the UDN Coordinating Center?
Applications that were recently mailed to the UDN Coordinating Center may not have been received. If you mailed an application after February 21, 2020, please contact the UDN coordinating center confirm that your application was received.
How do I know if my application was received?
When the UDN has received your application, you will receive a confirmation email.
Will there be a delay in reviewing applications?
It is possible that it will take longer to obtain medical records and review applications. We appreciate your patience and understanding during this time.
How should I submit medical records to the Stanford CUD?
Once you have submitted an application that is assigned to the Stanford CUD you will be contacted by a Stanford CUD research coordinator to obtain consent for electronic medical record collection. Work with our research coordinators before faxing or mailing any records.
What if I recently mailed or faxed medical records to the Stanford CUD?
Medical records that were recently mailed or faxed to the Stanford CUD may not have been received, or may have delayed arrival. Please contact us if you recently mailed or faxed records to our office.
Who should I contact with questions about my application?
We are unable to predict how long it will take to review your initial application. Please allow at least 8 weeks to review your initial application. For questions regarding your application, please contact the UDN coordinating center by emailing UDN@hms.harvard.edu or by calling 1-844-RINGUDN (746-4836).
For questions regarding medical record collection please contact the Stanford CUD by emailing email@example.com or by calling 650-736-2184.
Is the Stanford CUD having in-person evaluations?
No, all in-person evaluations have been postponed to protect the safety of our participants and employees. When appropriate, evaluations may be performed remotely via telehealth.
Is the Stanford CUD collecting samples?
Yes. Sample collection is being performed on a case-by-case basis. In-person sample collection is limited in accordance with local guidelines. Our research coordinator team is working with patient and families to perform remote sample collection when appropriate. Not all patients are eligible for remote sample collection at this time.
What if I have been sent a remote sample collection kit by the Stanford CUD?
If you have received a remote sample collection kit, follow the guidance provided by the Stanford CUD research coordinator. We are able to accept remote sample collection kits. The kits can be kept at room temperature.
Is the Stanford CUD performing clinical tests and procedures?
Stanford CUD clinical procedures are performed on a limited basis, in accordance with local guidelines. Virtual and telehealth options may be available for some participants. If you feel you need an urgent clinical visit, test or procedure please contact your clinical health care provider.
Is the Stanford clinical site accepting samples for genetic testing?
Yes, on a limited basis. Please follow the guidance provided by the Stanford CUD research coordinator.
Is the genetic testing lab still processing samples during this time?
Yes, the genetic testing lab is processing samples that have already been received and are running testing.
Will it take longer to get genetic testing results?
It is possible that genetic testing results will take longer.
What will happen when my genetic testing results are available?
We will contact you when your genetic test results are available.
Who should I contact with questions about my genetic testing results?
You can contact Stanford CUD staff at firstname.lastname@example.org to be connected to a genetic counselor.
Is the Stanford clinical site performing research tests and procedures?
Research tests and procedures are being performed on a limited basis. Any samples that have already been collected have been stored for future use.
Is the Stanford clinical site performing research analyses on existing data?
Yes, we will continue analysis of existing data that could contribute to making a diagnosis. It is possible that research analyses may be delayed.
Getting Support & Resources
Can I still get help from the Stanford CUD?
All Stanford CUD staff are limiting time on campus and have limited in-person evaluations and sample collection. In the meantime, our research coordinators can assist you by email at email@example.com. We will post updates on this page periodically as our operations evolve.
Are there other ways to stay involved in the UDN?
Yes! The following is a list of ways you may stay connected with the UDN:
- Follow latest news and updates regarding the UDN: https://undiagnosed.hms.harvard.edu/news/
- Follow latest news and updates regarding the Stanford CUD: https://undiagnosed.stanford.edu/
- Follow the Participant Engagement and Empowerment Resource (PEER) at: https://undiagnosed.hms.harvard.edu/peer/
- UDN participants may consider making a participant page profile: https://undiagnosed.hms.harvard.edu/participants/
- UDN participants may stay connected with other UDN participants through Facebook: https://www.facebook.com/groups/udnpeer
Do you have any suggested resources for the undiagnosed diseases community surrounding COVID-19?
Yes. The following is a list of resources that may be helpful to you: