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COVID-19: Questions & Answers

Image by CDC / Alissa Eckert, MS; Dan Higgins, MAMS

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 suspended.
  • All in-person evaluations and sample collection have been postponed.
  • All staff are now working remotely.
  • 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.

Applications

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 at 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. At this time, we are not able to receive medical records mailed or faxed to our office.

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. 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 undiagnosed@stanford.edu or by calling 650-736-2184.

In-person Evaluations

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.

Is the Stanford CUD collecting samples?

No, all sample collection, performed at Stanford CUD or performed remotely, is postponed.

What if I have been sent a remote sample collection kit by the Stanford CUD?

We are not able to receive samples that are collected remotely at this time. If you have been sent a remote sample collection kit, please refrain from going to a local lab for sample collection. Please hold on to the kit and await further instructions from the Stanford CUD. The kits can be kept at room temperature.

Is the Stanford CUD performing clinical tests and procedures?

All Stanford CUD related procedures are postponed. If you feel you need an urgent clinical visit, test or procedure please contact your clinical health care provider.

Genetic Testing

Is the Stanford clinical site accepting samples for genetic testing?

No, we are not accepting samples for genetic testing as we are not able to be on site to process them.

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 undiagnosed@stanford.edu to be connected to a genetic counselor.

Research

Is the Stanford clinical site performing research tests and procedures?

No, our research testing has been suspended in compliance with university policy. 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 now working remotely and have put on hold all in-person evaluations and collection until further notice. In the meantime, our research coordinators can assist you by email at undiagnosed@stanford.edu. We will post updates on this page periodically, so please check back in the coming days and weeks.

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:

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:

COVID-19-Related Resources for the Undiagnosed Disease Community
Undiagnosed Disease Network https://undiagnosed.hms.harvard.edu/covid-19/
En Español
Stanford Specific COVID-19 https://www.med.stanford.edu/covid19.html
https://stanfordhealthcare.org/stanford-health-care-now/2020/novel-coronavirus.html
https://www.stanfordchildrens.org/en/about/news/coronavirus
Child Mind Institute https://childmind.org/coping-during-covid-19-resources-for-parents/
En Español: https://childmind.org/enfrentar-el-covid-19-recursos-para-padres/
Global Genes https://globalgenes.org/coronavirus-covid-19-resources/
Patient Advocate Foundation https://www.patientadvocate.org/covidcare/
California Department of Public Health https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/Immunization/ncov2019.aspx
En Español: Para obtener información en español, visite nuestra página del Coronavirus 2019 (COVID-19).
CDC: Centers for Disease Control and Prevention https://www.cdc.gov/coronavirus/2019-ncov/index.html
NIH: National Institutes for Health https://www.nih.gov/health-information/coronavirus