Participation
People who have been seen at Mayo Clinic for their healthcare and meet study criteria may be invited to take part in the Tapestry 2.0 research study.
Eligibility
You may be able to take part in the Tapestry 2.0 research study if you:
- Are at least 18 years old.
- Are a registered Mayo Clinic patient.
- Can give informed written consent.
- 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 Tapestry 2.0 research 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 take the blood sample at Mayo Clinic. If you already have an appointment at Mayo, the study team will try to add the research blood draw to that appointment so you don't need to make a separate clinic visit. If you don't have an appointment or can't add a blood draw to your appointments, the study team may contact you to make other arrangements.
- You will tell us about yourself. We will ask you to fill out surveys and questionnaires, including a 24-hour food diary.
- You may need an app. We may ask you to download a mobile app on your phone.
Results
The testing done for the Tapestry 2.0 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 Tapestry 2.0 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 Tapestry 2.0 registry at Mayo Clinic will store your genetic information and samples. Mayo Clinic or other organizations 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's Center for Individualized Medicine offers these parts of the Tapestry 2.0 research study free to you:
- Collection of research samples, including blood, urine, saliva and stool.
- Processing and storage of research samples.
- More research testing.
- 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 $10 for each type of sample you collect and return to Mayo Clinic — up to $40 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 $10 for each added sample that you collect and return.
Risks
Before you agree to join the Tapestry 2.0 research study, you should know about the risks:
- 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. 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. We do not plan to routinely return the results of research testing. But we may find information that could affect your health or your family's health. This is called an incidental finding. 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 Tapestry 2.0 research 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.