FREQUENTLY ASKED QUESTIONS

• The 10,000 Families Study is looking at the influence of genetics, lifestyle, and environment on health. Studies that observe family members over an extended period of time can help us understand health across a person’s lifespan; identify risk and protective factors that occur in families; and understand differences across families and communities.
• Health professionals need information from research to take action that prevents illness and improves quality of life. Our goal with the 10,000 Families Study is to provide new information on what factors contribute to health in Minnesota.  With that information, we may help all Minnesotans in the future by providing better advice on living a healthy life and guiding policies to protect our health.
• We are currently funded by the National Cancer Institute (NCI) to evaluate the role of environmental exposures on cancer risk. As part of this study, we are measuring three types of exposures that individuals living in Minnesota and the surrounding states commonly experience: radon, glyphosate, and PFAS (forever chemicals). More information about these exposures can be found here: Radon, Glyphosate, and PFAS.

• The 10,000 Families Study is being conducted at the University of Minnesota.
• The study is led by experienced researchers from the School of Public Health and Medical School with support from a dedicated team of staff members and volunteers. These researchers are experts in areas like epidemiology (the study of disease and health patterns, causes, and control), genetics, biostatistics, and lab medicine.
• We are currently funded by the National Cancer Institute and the University of Minnesota Masonic Cancer Center, Medical School, and School of Public Health.

• The 10,000 Families Study is a cohort study.  A cohort study involves asking individuals questions about their lives to better understand their health and then monitoring them over a period of time to determine how their health changes and which conditions develop. The study began in 2017 and is currently funded through 2027.
• There is no planned end date for the study.  Families can participate for as long as they choose. The longer families stay members of the study, the more we can learn to improve healthcare and public health.

• All Minnesotans are welcome to join, regardless of age (children under 18 need a parent or guardian to enroll them).
• At least two people from each family must meet these criteria, but the more, the better!
• The person starting the enrollment process must live in Minnesota, but other family members participating in the study can live in North Dakota, Iowa, South Dakota, or Wisconsin.
• Adoptive and step-relatives, as well as spouses and partners, are welcome to join too!
  We never ask about your legal status or your social security number.

• There is no health requirements to join the study. Participants can be in good health, have any illness or condition, be in recovery, or be a survivor of an illness.
• Participation in the study is free of charge, and you do not need health insurance to take part. However, the study does not provide any health care or treatment.

We ask participants to spend about 2.5 hours on study related activities:

• 1 hour to complete an online health questionnaire and sign consent & HIPAA forms.
• 1 hour for a health visit to take physical measurements and samples.
• 0.5 hours to send in the wristband and set up/send in the radon test.

Every two years, we will ask you to give us a brief update on your health status.

You can leave the study at any time.

We will mainly contact you by email, although we sometimes reach out by phone or text. 

If you are the person initiating the participation process for your family, you will receive email messages asking you to invite other family members. You will also receive email requests to complete the online health questionnaire and 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. You will also receive study news and updates.

• All personal information is securely stored on the University’s servers.
• The National Institutes of Health has issued a Certificate of Confidentiality (CoC) to legally protect participants’ personal information.
• Biological samples, including:
  • blood, saliva, and urine, are stored in a secure laboratory.
• Only authorized study team members, who are trained in confidentiality and research ethics, have access to this data.
• The University of Minnesota Institutional Review Board (IRB) oversees and approves all aspects of the 10,000 Families Study to ensure participant protection.
• Data shared with other researchers or labs will be de-identified (i.e., made anonymous) and aggregated.
• Participants may choose whether to release their or their child's results to a healthcare provider or third party (excluding genetic tests), as indicated on the consent form. 

For further details on privacy and participant rights, refer to the Consent, Assent and Privacy documents.

A consent form is a legal document that provides important details about the research study. It helps you, the participant, make an informed decision before joining. The form explains the information and samples you will provide, how your data will be used, who will access it, and the measures taken to protect your privacy. It also outlines potential risks of participation.

You must complete the consent form to participate in the study. By signing, you confirm that you understand the study’s requirements and the associated risks. If a participant is under 18, a parent or guardian must complete the form on their behalf.

Consent, Assent, and other privacy documents.

• We have two different questionnaires: one for adults and one for children who are under the age of 18. They cover health habits, personal and family health history, environmental exposures, residential history, and daily life.
• 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. 

Yes, you can. You will receive a code that allows you to return to the questionnaire as many times as needed until you complete it. If you cannot find your code, please email us at  [email protected], and we will provide it for you.

You will complete an initial questionnaire when you begin your participation in the study. Then, about every two years, we will ask you to complete a new questionnaire to learn about any changes, such as your current health or new family members. The questionnaire to update your information is much shorter (about 15-20 minutes).

During a health visit, we take your physical measurements and collect biological samples, which will be stored for future testing of environmental exposures.

We will measure your height, weight, waist and hip circumference, blood pressure, and pulse.

We collect samples of saliva, blood, and urine.

We currently offer two options for completing the health visit:

1. Visits are held at The Advanced Diagnostic and Research Laboratory, part of The University of Minnesota's Twin Cities campus. These in-person visits are typically on Saturdays. 
    
2. For those who choose not to do an in-person visit, we offer a mobile health visit. If you choose this option, a kit will be mailed to you directly, and a phlebotomist will visit you/your family, typically in your home, to complete the health visit.

For in-person health visits, free and convenient parking is available on-site as well as nearby access to the light rail. 

When you sign up for a health visit, we will ask if you/your family will need free passes for public transportation or other accommodations.

Genetic testing is planned but has not yet started. When genetic testing becomes available as part of the study, results may indicate information regarding your ancestry or risk for certain health conditions.

Silicone wristbands are used to measure chemicals that you may be exposed to in your environment. They detect over 100 different chemicals, including PFAS.

Wristbands will be provided to all participants ages 3 and up. Children under 3 will not receive a wristband due to potential choking hazards.

• Participants should wear the wristband like a regular bracelet, ensuring it stays in contact with the skin to gather accurate data on exposure.
• Wristbands are sent to a specialized lab to measure the chemicals that participants were exposed to during the 7 days they wore the wristband.

The wristbands are made from safe, non-toxic silicone. In rare cases (<1 in 1,000 participants), it is possible that the wristband may lead to irritation on your skin. Removing the wristband should resolve the issue.

Yes, the wristband is designed to be worn during your everyday activities. There are no restrictions, and it can be worn while sleeping, bathing, and engaging in most daily tasks.

• By participating, you help ensure that the study's results benefit the entire community. You are also contributing to scientific research!
• Participants will receive results from some of the health visit and environmental tests, when available.

• A $30 e-gift card will be awarded after completing your health visit:
  • $15 for completing the questionnaire (adult or child)
  • $15 for completing the health visit (adult or child)
• A $5 e-gift card for returning your wristband.
• A $5 e-gift card for sending back your home radon test (one per household)

The study does not provide healthcare for any health conditions participants have or that are identified during the study’s activities. However, we recommend that you share any abnormal results we find with your healthcare provider. If you do not have a healthcare provider, we can provide recommendations for healthcare resources in your community.

You will receive results from your radon test and some of your physical measurements like height and weight. Genetic testing has not started yet, but when it does you may choose to receive results related to increased risks for serious health conditions (if they are actionable). This option is outlined in the consent form. Here is a link to the  Consent, Assent, and privacy documents.

We will share study updates and related health news through our newsletter, videos, articles, and other formats. We are committed to collaborating with our partner organizations, participants, and supporters to share findings that aim to improve health across communities.

We collect information on participants' race, ethnicity, and national origin through our eligibility screener and online questionnaire. Participants can choose more than one option or select mixed race/ethnicity. We will share a summary of the study's demographics, but individual or family information will never be reported.

We take several steps to ensure participants' safety, including protecting personal information, following ethical guidelines, and collaborating with community leaders for input. We also make sure participants have access to any necessary resources and provide clear instructions throughout the study process.

We would love to hear your thoughts on our study, the news we share, what we are doing well, and how we can improve. You can provide feedback by filling out our online contact form or emailing us at [email protected]. You can also talk to our 10KFS team during health visits, events, or other opportunities. Feel free to speak up—your opinion matters 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.