DKMS x UCSF COVID-19 Mapping

The purpose of this study is to learn more about the relationship between genetics and COVID-19, the disease that is causing the global pandemic. Researchers at the University of California, San Francisco (UCSF), in collaboration with DKMS, will gather information about whether you experience symptoms related to COVID-19 that you provide through surveys in an app on your smartphone. This information will be compared with the genetic data that you provided when you joined the DKMS registry. This genetic data, when provided for the study, will not be connected with your name (that is, it will be de-identified).

As a registry member, you have been invited to participate in order to study your de-identified genetic information (data that will not be connected to your name). When you joined the DKMS registry you provided your genetic data by either swabbing your cheek or having blood drawn. Your sample was then processed to determine your Human Leukocyte Antigen (HLA) type, and the results were added to your member record. This genetic information is what is used to match patients and donors for transplant.

When you consent to participate in this study, DKMS will provide your genetic data to a research team at the University of California, San Francisco, led by Jill Hollenbach, Ph.D., M.P.H. Your de-identified genetic information will be linked to your survey results. Your name and other identifying information will not be shared with anyone.

Yes, anyone who received an invitation letter is eligible to participate in the study. We are interested in learning whether you experience symptoms or illness related to COVID-19 in the future through weekly or monthly surveys on the app.

Sign up and your first set of surveys will take about 20-25 minutes, and then we’ll ask for about 5-15 more minutes of your time per week.

Data will be stored for a minimum of three years, as required by the funding agency. All data will remain on a secure server at the University of California, San Francisco.

No, your decision to participate (or not participate) in this study will not impact your chances of being called as a match for a patient in need of a marrow transplant.

Your participation is voluntary. Your decision to participate or not participate in this study will not change your membership status on the registry or your chances of being selected as a donor for a patient in need of a marrow transplant.

UCSF and its collaborators, including DKMS, will seek to publish the study findings. All de-identified information will be combined and published or presented in the form of summary statistics, such as tables and graphs. Any information that you provide will be kept secure and in strict confidence.

Unfortunately no, because all responses will be de-identified for analysis. The data will not be connected to your name and the study results will only be reported in aggregate form. For a copy of the published results, please contact jill.hollenbach@ucsf.edu.

UCSF is the leading university exclusively focused on health. UCSF is driven by the idea that when the best research, the best education and the best patient care converge, great breakthroughs are achieved. A hallmark of its excellence is UCSF's spirit of collaboration that is carried through its partnerships across the campus and the world in pursuit of its advancing health worldwide™ mission. For more information about UCSF, visit http://www.ucsf.edu/about. For more information about Dr. Hollenbach’s work, visit http://profiles.ucsf.edu/jill.hollenbach and https://hollenbachlab.ucsf.edu.

If you have a question that cannot be answered within this FAQ, please contact DKMS at 212-209-6700 between 8 a.m. – 6 p.m. EST Monday – Friday to speak to a representative or email studies@dkms.org.