FREQUENTLY ASKED QUESTIONS
About the Study
The 10,000 Families Study is looking at the influences of genetics, lifestyle, and environment on health and illness. Family studies help us understand health across the lifespan and transmission of risk and protective factors from one generation to another, as well as differences within families and across communities.
Only by knowing what causes or protects against disease can public health and healthcare professionals take action to best prevent diseases from harming people and to improve quality of life. Further, we want to do a study that is focused on Minnesota: people from every part of the state, including its large rural and immigrant populations
10KFS is based at the University of Minnesota. A team of experienced researchers from the School of Public Health and Medical School are leading it, along with multiple staff and volunteers. The researchers are experts in things like epidemiology (the study of disease and health patterns, causes, and control), genetics, biostatistics, and laboratory medicine.
Currently we are funded by a generous grant from the Minnesota Masonic Charities through the University of Minnesota’s Masonic Cancer Center. We are looking at various sources of support to sustain and expand the study, including foundations, individual donors, federal grants, and state government support.
We had the idea and started to put together the study in late 2017. The study should run for many years to see what health conditions emerge and who stays healthy over time. Families can participate for as long as they choose. The longer they stay with us, the more we learn for healthcare and public health.
We ask participants to give about 4 hours of their time:
• to complete an initial online health questionnaire and consent forms (1 hr), and
• to take part in a health visit for health measurements (3 hrs at most).
About every two years, we will invite you to give us a brief update on your health status. You can withdraw from the Study at any time. Please refer to the question “How will you contact me and how often?” for details on future contact.
Our main way of communication is via email--though we occasionally reach-out by phone. If you are the person to start the participation process for your family, you will receive email messages asking you to invite other family members. You will receive email requests to fill out the online health questionnaire and to register for the Health Visit for yourself and any children you have under age 18.
About every two years, we will invite you to give us a brief update on your health status, and later we will follow-up for health measurements in a Health Visit or by mail. You also will receive study news and updates.
- Personal information is protected on University secured servers.
- Personal information is also legally protected by a Certificate of Confidentiality (CoC) granted by the National Institutes of Health.
- Biological samples are stored in a University secure laboratory (for instance any blood, saliva, urine, stool, hair and nail clippings).
- Investigators and staff are trained in confidentiality and privacy protections and research ethics. Only the study team will be able to see your information.
- The University of Minnesota Institutional Review Board (IRB) monitors and approves our processes and reviews any changes that could affect study participants.
- Any information we share with other researchers or other laboratories will already be combined with others’ information and without any identity information on it.
- It is your choice to allow the release of results from your (or your child’s) study participation to your health provider and/or other third party (does not include genetic tests). This can be done on your consent form (or on the parental consent form for a child under age 18).
For more information on participant privacy and rights click on this page:
- Anyone of any age (children under age 18 are enrolled by their parent or guardian).
- Adults who understand what participation involves and are able to make an informed decision.
- Minimum of two people per family to enroll. The more the merrier!
- The person who starts the enrollment process for the family needs to live in Minnesota, but other family members can live in North Dakota, Iowa, South Dakota, or Wisconsin.
- Adoptive and step-relatives and spouses and partners are welcome!
- We never ask about legal status, and we do not ask for social security number.
There is no requirement about health - Participants can be in perfect health, suffer from any disease or condition, be in recovery from, or be a survivor of an illness.
There is no requirement about health insurance - Participation in the study does not have any cost. The study does not provide care or treatment of any kind either.
They mainly cover four areas: health habits, personal and family health including health history, environmental exposures, and daily life. The study’s initial health questionnaire collects in-depth information. The adult questionnaire takes an average of 45 minutes, while a child’s questionnaire takes about 30 minutes for the parent or guardian to complete. The questionnaire to update two years later is much shorter (about 15 minutes)!
Yes, you can. You will receive a code to return to your questionnaire as many times as necessary until you are able to complete it. If you cannot find your code, please email us at [email protected] or call (612) 301-2726, and we will provide it.
We need you to fill out one initial questionnaire when you begin your participation in the study. About every two years we will ask you for updated information to learn about any changes. For example, we will ask you about your current health, new family members, etc.
Health Visit - "On-hold due to COVID-19"
We hold health visits at least once a month. Most are held on Saturdays at a University clinic in Minneapolis with on-site free parking and bus and light rail access.
Coming soon we will have regional locations in greater Minnesota or elsewhere in the Twin Cities metro area. If none of these options works for you, please contact us at [email protected] about other options.
Although genetic testing is planned, we have not yet started it. Our genetic profiles and sequencing may reveal something about your ancestry, but we are mainly looking at genes related to health conditions.
We measure height, weight, waist, hip circumference, blood pressure, pulse, vision, and grip strength. Using digital applications, we test hearing, lung function, cognitive function (for people age 41 and over), and do an electrocardiogram (EKG).
We also ask people to give samples of hair, saliva, nails, and urine. For adults we ask for a blood sample, which kids ages 12-17 can also choose to do if they want. These samples will allow us to do genetic testing later in the study (not yet begun). Finally, we give people a stool sample kit to take home and send back after the health visit.
- A chance to win a $250 Amazon gift-card each time you complete a health questionnaire for yourself or your child under age 18..
- A $25 gift-card at the end of the health visit.
- Receiving health results from some testing done at the health visit.
- As a participant you are helping make sure that study findings reflect and benefit the whole community, and you are also contributing to science!
The study does not provide healthcare for any health condition participants have or that we identify during normal study activities. However, we recommend that you take any abnormal results we find to your healthcare provider. If you do not have a healthcare provider we can give you recommendations of healthcare resources in the community.
We will share some results of physical measurements with individual participants, but genetic testing hasn’t begun yet. You might choose to receive genetic test results that show increased risk for a serious health condition for you or your child under age 18. However, we will only give you this information if there are steps that you can take to keep this condition from happening. These types of conditions are very uncommon in the population. The option to receive those results can be found on the consent form.
We will share study updates, as well as related health news from other sources. That information will be shared through our newsletter, videos, articles, and other ways. We are committed to sharing study findings in collaboration with our partner organizations and supporters. Our goal is to discover and share information that improves health across communities.
We gather information on participants’ race, ethnicity, and national origin in our eligibility screener and our online questionnaire. People can choose more than one option or mixed race/ethnicity. We will report a summary of our Study demographics, but never report individuals’ or families’ information.
We know some communities have been harmed by health research in the past. We are building relationships with community leaders, with whom we will work to create a statement of ethics that reflects our commitment to avoid repeating those harms. We are and will continue to seek community guidance in our study processes and future sharing of results.
We want to hear ideas and thoughts about our study, news we share, what we are doing right, and what we could do better.
You can fill-out our online contact form, email us at [email protected], or call us at 612-301-2726. You can talk with our 10KFS team at health visits, events or elsewhere. Feel free to speak-up! Your opinion is important to us!
This research has been reviewed and approved by an IRB within the Human Research Protections Program (HRPP). To share feedback privately with the HRPP about your research experience, call the Research Participants’ Advocate Line at 612-625-1650 (Toll Free: 1-888-224-8636) or go to z.umn.edu/participants.