Participation

People who have received healthcare at Mayo Clinic and meet study criteria may be invited to take part in the Mayo Clinic Precure Study.

Eligibility

You may be able to take part in the Mayo Clinic Precure Study if you:

  • Are at least 18 years old.
  • Are a registered Mayo Clinic patient.
  • Can receive and send mail and packages within the United States. Some limitations may apply if overnight FedEx shipping is not offered in your area.
  • Have email and internet access. This is needed to fill out the consent document and some parts of the study.

What to expect

If you join the Mayo Clinic Precure Study:

  • You will give blood, urine, saliva and stool samples. We will mail you all the supplies needed to collect urine, saliva and stool samples in the comfort of your home. We also will send a prepaid package to return your samples to Mayo Clinic.

    We will collect a blood sample. If you already have an appointment at Mayo Clinic, the study team will try to add the research blood draw to that appointment so that you don't need to make a separate clinic visit.

    If you do not live within a reasonable driving distance to an approved Mayo Clinic location, you may have blood collected using a company that will send qualified staff to your home or other location you choose. There is no cost to you for this service.

  • You will tell us about yourself. We will ask you to fill out surveys and questionnaires.
  • You may download a mobile app. We may ask you to download a mobile app on your phone to answer questions and complete activities.

Results

The testing done for the Mayo Clinic Precure Study is only for research purposes and is not meant to help with your healthcare. In most cases you will not get the test results.

Sometimes, when doing genomic testing for research purposes, we find information that might affect your health or your family's health. This is called an incidental finding. If this happens, we will contact you. You can choose whether to be given this information. Because we will be studying the information from the Mayo Clinic Precure Study for many years, this could happen at any time in the future.

If you decide to learn about your incidental findings, you may need to get more medical testing or care. If this happens, you or your insurance company will be billed for these costs.

Future research

The Mayo Clinic Precure Registry at Mayo Clinic will store your genetic information and samples. Mayo Clinic or other organizations, including commercial entities, may use registry contents for future research or commercial use. Mayo Clinic won't share your personal information with anyone outside Mayo.

Costs

Mayo Clinic offers these parts of the Mayo Clinic Precure Study free to you:

  • Collection of research samples, including blood, urine, saliva and stool.
  • Processing and storage of research samples.
  • Research testing on samples.
  • Access to a mobile app.

You or your insurance company need to pay for all other tests and procedures that are part of your care outside of the study. This includes copayments and deductibles.

Payment

You will get $50 for each type of sample you collect and return to Mayo Clinic — up to $200 for all four samples (blood, urine, saliva and stool). If you can't give all four samples, the study will pay you for the samples you collect and return.

We may ask you to collect more samples in the future. If this happens, you will get $50 for each added sample request.

You will also receive up to $100 for completing surveys and mobile app activities.

Risks

Before you agree to join the Mayo Clinic Precure Study, you should know about the risks. These include:

  • Blood draws. The risks of drawing blood include pain, bruising, lightheadedness and fainting. Rarely, an infection can occur where the needle enters the skin.
  • Emotional discomfort. Some survey questions may make you uncomfortable. You can choose not to answer those questions.

  • Confidentiality. As with all research, there is a chance that unauthorized people could see your medical information. We take steps to lower this risk.

    Please read the Data Privacy, Insurance, and Discrimination section of the FAQ document on the Resources page for more information about who might access your personal information and how it is protected.

  • Genetic testing. In most cases, we will not tell you the results of the genetic tests you have done as part of Mayo Clinic Precure. But we may find information in your samples that could affect your health or your family's health. This is called an incidental finding. If there is an incidental finding in your genetic test results, we will contact you to tell you about it. Learning about these findings could upset you, cause you to worry, or cause insurance or job discrimination. You can choose not to learn about incidental findings if you are worried about this risk.

    Some insurance companies could use information from incidental findings to change your premiums. In the U.S., the Genetic Information Nondiscrimination Act (GINA) makes it illegal for health insurance companies, group health plans and most employers to discriminate against you based on your genetic information.

    GINA does not protect everyone. GINA does not protect long-term care, life or disability insurance.

    Mayo Clinic offers patient education information (PDF) about genetic information discrimination and the protection that the Genetic Information Nondiscrimination Act offers. If you have questions after reviewing the PDF, please contact the study team.

Benefits

The Mayo Clinic Precure Study gathers information to advance research and improve healthcare in general. Its goal is not to improve the health of the people who enroll. While you won't directly benefit from taking part in the study, others may benefit in the future from what this study reveals.