The diverse, hard-to-read genes vital to bone marrow matching also help our bodies fight germs. But science can't yet predict, from these or other genes, how we may catch or resist particular infections. To learn how our versions of these genes may matter in COVID19, Gift of Life launched this study with scientists who specialize in such research. We hope doing so will help more patients beat COVID19 in future.
We will survey consenting Gift of Life members online, to statistically compare many people's COVID19 experiences, along with their versions of tissue match genes, in order to spot any pattern(s) that help understand the pandemic.
Any 18 to 89-year-old member of Gift of Life can join this study, even if no longer qualified to give bone marrow (such as for age or health reasons). To help link survey answers with the right DNA data, please use the unique invitation link that Gift of Life emailed you (not a forwarded or copied link).
If you join the study, the researchers will study your survey answers together with your existing Gift of Life member profile and DNA data (from tissue match genes read from your mouth swab when you became a member). Such information remains confidential, and not identifiably linked to you in data seen, used, or published by the study researchers.
No, the study doesn't involve giving bone marrow or any other new tissue sample. Rather, it uses existing DNA data from tissue match genes, as already read from a mouth swab or blood sample whenever someone becomes a Gift of Life member.
Yes, your data help the study even if you've never had COVID19 or been tested. Understanding the pandemic requires data from many people, including those never infected or exposed, to see what factors shape the pandemic.
If you join, authorized researchers at Gift of Life, Root, and Rutgers Cancer Institute will study your de-identified genetic and survey data, to learn how DNA and other factors may shape who gets and/or resists COVID19. De-identified means that your identity and distinguishing personal details (such as email, street address, etc.) will not be connected to your data, so the researchers won't know who you are. The researchers will publish what they find about big groups of people (not individuals, families, or other small groups), as science paper(s) free for the public to read, in order to help understand COVID19; they won't sell, rent, or otherwise use or share such data.
Please don't use a forwarded or copied link to join the study, as that link works correctly only for the Gift of Life member who originally received it, not you. If you wish to join, check your email for your own link from Gift of Life — or first join Gift of Life here.
If you manage consent decisions for a Gift of Life member (for example as their guardian or proxy while they are incapacitated or after they have died), you can fill out the study survey via the unique link Gift of Life emailed that person. In that case, please answer all questions from that person's perspective, not yours.
Joining the study is purely voluntary, and does not affect your relationship with Gift of Life. Your survey answers about health and weight may change your eligibility to give bone marrow, by updating relevant information in your Gift of Life member profile. Your decision will not affect whether you get called as a potential donor if you are 18 to 60 years old and meet Gift of Life's medical guidelines.
In this study, Gift of Life partners with Root, a scientific company that interprets genetic variation; and Rutgers Cancer Institute, an accredited academic institution. Reseachers at the three institutions (and anyone else outside authorized Gift of Life communications and computing systems staff) will jointly see only de-identified data from you (if you join the study) and other consenting participants; will use such data only to understand COVID19, not for other purposes; and will not sell, rent, or otherwise share it.
No. Gift of Life keeps member profile data confidential: only authorized communications and computer systems staff (not researchers or others) can see distinctive background data about you and any close family/home-sharers (such as your name, email, or street address). The study itself will only gather basic survey data that define large groups of people (not individuals), linked with de-identified genetic and background data that do not suffice to pinpoint you or anyone else.
No. Your decision to join the study or not (and your survey answers, if you do join) remain confidential, and not legally accessible to your insurance provider, employer, or others. And joining or not joining will not improve, lessen, or otherwise affect your healthcare itself.
No. Some people feel stress from answering a survey, but participating otherwise brings no foreseeable personal health risk or benefit. If you have any medical question(s), please talk with your primary care physician.
No. The study will not discover or predict anything about your own health. If you have a medical question, please talk with your primary care physician.
No. You will not get paid, or otherwise tangibly benefit, from joining this study.
As infections can spread in households, and may also involve our genes, we ask about personal, home, and family experiences with COVID19 to help understand the pandemic. Your answers remain confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
People who live together may or may not also share lots of DNA (as family), and vice-versa. So to best understand such factors in COVID19, we ask about blood family versus other kinds of home-sharers and family. Your answers remain confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
A parent and child nearly always share at least one full copy of each of gene that Gift of Life screens. And, on average, full siblings likewise tend to share one copy of each such gene. More distant relatives, by contrast, less reliably share gene copies — so we ask specifically about parents, children, and full siblings, to better spot any specific genetic trend in who gets and/or heals from COVID19. Your answers remain confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
To gather reliable data on COVID19, we ask about diagnosis by a doctor or nurse, rather than symptoms the disease may share with other causes. Your answers remain confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
To help understand COVID19 in people diagnosed with it, we ask them (or the person answering the survey on their behalf) about any hospitalization, ventilator use, drugs, and/or other treatment(s) they got. Your answers remain confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
To help understand COVID19 in people diagnosed with it, we ask them (or the person answering the survey on their behalf) about any recovery afterward. Your answer remains confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
To understand how the virus that causes COVID19 spreads (as evident by viral RNA in our noses), and how our cells respond to it (by making specific proteins in our blood), we ask how and when you last got tested, and what result(s) you got. Your answers remain confidential, and not identifiably linked to you in data seen, used, or published by the study researchers.
Each of us likely knows our own testing history better than those of other people. So for reliable data, we ask only about your own testing history (or that of the person whom you represent, as a guardian for example). Your answers remain confidential, and not identifiably linked to you in data seen, used, or published by the study researchers.
Public data suggest that geography may figure in who gets COVID19, in ways not yet clear. So to help understand the pandemic, we ask your current US zip code or non-US city/region (which may have changed since you originally registered as a Gift of Life member). Your answer remains confidential, and not identifiably linked to you in data seen, used, or published by the study researchers.
Public data suggest that body mass index (BMI) may figure in who suffers from COVID19, so we ask your current weight in order to estimate BMI from your Gift of Life-registered height. Your answer remains confidential, and not identifiably linked to you in data seen, used, or published by the study researchers.
Public data suggest that particular background health conditions may shape who suffers from COVID19, so we ask about a few of these. Your answers remain confidential, and not identifiably linked to you in data seen, used, or published by the study researchers.
Public data suggest that home, school, and work settings may shape COVID19 risks, so we ask about these. Your answers remain confidential, and not identifiably linked to you in data seen, used, or published by the study researchers.
Public data suggest that many factors may shape COVID19. We ask about some such factors, with basic answer options that many people can quickly and accurately choose. In monthly follow-up, we may ask about further factors that may matter in COVID19. Your answers remain confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
When you registered as a Gift of Life member, you gave your biological sex, height, and ethnicity (all of which may matter in who gets COVID19); so to keep the survey short we don't ask again. Your information remains confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
To study how COVID19 spreads and fades, and how people with varied genes and environments respond to it, we hope to ask short questions each month for the coming year. You can opt out of follow-ups if you wish, but answering them helps a lot.
Our followup surveys let you track such changes, to refine key data for the study. As with all study questions, your answers remain confidential, and not identifiably linked to you or others in data seen, used, or published by the study researchers.
You can ask a question about the study itself, or how to participate, by clicking here. You can also email the independent Institutional Review Board that oversees this study at info@neirb.com. If you have a medical question, please talk with your physician.