Q&A

General questions

Is Mayo Clinic's SCAD Registry still enrolling patients?

Yes. Find more information about study participation and how to enroll.

What is a registry?

In general, a registry is a database of patient information that is used to look for patterns that could guide future research. We remove your name and identifying information, such as your address and birth date, when we perform analyses, and we don't share any identifying information outside the research project. We do keep in contact with participants with news, updates and opportunities for additional participation.

Mayo Clinic's SCAD Registry includes information from eligible study volunteers, regardless of whether or not they have been Mayo Clinic patients. Researchers use information in the database to look for links between different diseases or risk factors. We use it to search for signs to tell that disease exists or if it's getting better or worse. Registry data also can help researchers come up with and follow up on new SCAD-related hypotheses.

What is a biobank?

A biobank is a collection of biological samples, such as blood or genetic material, and health information. Different biobanks collect different types of samples and information. The types of information and samples collected depend on the specific purpose of the biobank. Some biobanks are specific to a condition, such as SCAD. Other biobanks are population-based and contain samples and information from people in a specific population or region.

What type of information does Mayo Clinic's SCAD Research Program collect?

Each participant provides a medical history and answers questions about themselves. Each participant can choose to contribute genetic samples, as can eligible family members. The research team may collect samples at Mayo Clinic, or the program can mail kits to participants for collection at a local laboratory. Samples are stored in secure facilities at Mayo Clinic.

The combination of a registry and a biobank of physical samples allows researchers to do a wide range of studies.

What studies could Mayo Clinic's SCAD Research Program do?

Please read about the program's research projects for more information on how Mayo Clinic's SCAD Research Program uses registry and biobank content in research.

How long will the SCAD Research Program run?

The program is meant to serve the research community for years. There are no plans for it to end.

For patients

What is expected of me when I join Mayo Clinic's SCAD Research Program?

Please review the page on participating in Mayo Clinic's SCAD Research Program.

How can I enroll in SCAD research studies at Mayo Clinic?

Please review the page on participating in Mayo Clinic's SCAD Research Program.

To speak with a study staff member who can answer your questions, provide you with more information and mail a packet of information to your home address, please contact the SCAD study coordinator.

Do I need to travel to Mayo Clinic to participate in the studies?

For most of the research studies, you do not need to travel to Mayo Clinic. The SCAD Research Program can do most of the research via mail and electronically. However, the program does perform some prospective studies which require on-site participation.

Can I find out how my information is being used?

No. You will not be told which studies are using your samples and information. Not all participants' samples are used for every study. You can get general information about all studies that use the registry.

You can decide to stop receiving information at any time.

Will I find out if researchers discover anything about my health?

Mayo's SCAD Research Program isn't intended to produce final study results about any one person. But if the program discovers something that could be important to your health, a staff member from the program will contact you to see if you want to learn this information.

Privacy and security

How are the samples and information stored?

At Mayo Clinic, all physical samples are secured in locked freezers, and access to them is limited. The building is under constant video surveillance. Personal medical information is stored in computers that are protected by electronic security measures.

If samples and information leave Mayo Clinic, then Mayo cannot control how the samples and information are stored.

Who uses the samples and data from Mayo Clinic's SCAD Research Program?

Researchers from within Mayo Clinic and from collaborating research institutions across the world use samples and data from the SCAD Research Program. Mayo Clinic removes all identifying information from samples before sharing them. And Mayo does not release the de-identified specimens to outside researchers until the proposed study has been rigorously reviewed and approved by these committees:

• The Institutional Review Board (IRB), which makes sure that all projects are ethical and appropriate.
• The IRB's Mayo Clinic Biospecimens Subcommittee, which makes sure that only the necessary amount of specimen is collected and used, and that all specimens are used only for research that the IRB has approved.

Find out more about Mayo Clinic's IRB.