DKMS x UCSF COVID-19 mapping

COVID-19 has profoundly impacted millions throughout the world, drastically changing each of our lives.

In collaboration with the researchers at the University of California – San Francisco and the Center for International Blood and Marrow Transplant Research led by Jill Hollenbach, PhD, MPH, DKMS is extending an invitation to our registrants to help in the development of vaccines and therapies by downloading and using a smartphone app.

Information collected will help inform an important research study to learn more about the novel coronavirus (the virus causing COVID-19) and the genes of the immune system.

Below are answers to additional questions you may have about participation in this study. We hope this will help your decision in whether to participate.

Feel free to contact us at studies@dkms.org or 212-209-6700.

FAQs

What is the purpose of this study?

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 the National Marrow Donor Program®/Be The Match® and Stanford University, 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).

How was I chosen to participate in this study?

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.

Who will have access to my genetic information as part of this study?

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.

Can I participate in this study if I have not had COVID-19?

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.

How much time will the surveys take?

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.

What will be done with my survey responses after the study is complete?

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.

Will my participation in this study improve my chances of being matched with a patient for transplant?

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.

What if I do not want to participate?

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.

Where will the results of this study appear?

UCSF in collaboration with the CIBMTR® (Center for International Blood and Marrow Transplant Research®) 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.

Can I see how my genetics compare to my survey responses?

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.

Where can I learn more about CIBMTR?

CIBMTR is the research collaboration between the National Marrow Donor Program/Be The Match and Medical College of Wisconsin. CIBMTR’s commitment to research has had a significant impact on blood cancer survival and the quality of life for thousands of transplant patients. CIBMTR is leading the way in conducting breakthrough research that is saving more lives today. For more information about CIBMTR, visit http://www.cibmtr.org/pages/index.aspx.

Where can I learn more about UCSF research?

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.

Who do I contact if I have questions?

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 studies@dkms.org.

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