Questions and Answers
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. Patient data are made anonymous and placed in an electronic database system. This enables researchers to analyze the data using statistical analysis software.
Mayo Clinic's SCAD registry includes information from eligible study volunteers, whether they have been patients at Mayo Clinic or not. It is primarily a descriptive database, used to look for associations, prognostic markers and data that may help researchers generate 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 particular condition, such as SCAD. Other biobanks are population-based and contain samples and information from people in a specific population or region.
What types of information are collected by the Mayo Clinic SCAD Research Program?
A medical history and questionnaires are collected from all participants. Each participant has the option to contribute genetics samples, as do their eligible family members. Samples may be collected at Mayo Clinic, or kits may be mailed 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 perform a wide range of studies, now and in the future.
What studies might be done in the Mayo Clinic SCAD Research Program?
Please see the pages on focus areas and projects for more information on how registry and biobank content is used in research.
How long will the SCAD Research Program run?
The program is meant to serve the research community for years, and there are no plans for it to end.
What is expected of me when I join the Mayo Clinic SCAD Research Program?
Please see the page on participating in the Mayo Clinic SCAD Research Program.
How can I enroll in SCAD research studies at Mayo Clinic?
As long as you are at least 18 years of age and are a SCAD patient, you are eligible to participate, whether or not you are a patient at Mayo Clinic. The first step is for Mayo staff to obtain the actual images from your coronary angiogram(s) to review and confirm the diagnosis of SCAD. You will need to sign a release of information form in order for Mayo study personnel to obtain those.
To speak with one of our study staff who can answer your questions, provide you with additional information and mail out a packet of information to your home address, please contact our study coordinator.
Do I need to travel to Mayo Clinic to participate in the studies?
No. For the research trials themselves, you do not need to travel to Mayo Clinic. We can do most of the study via mail and electronically. However, in order to see if you qualify for various studies, we must obtain and review a copy of your angiograms to confirm the diagnosis and make sure you meet our study criteria. Our study coordinator can work directly with you to obtain relevant medical records.
Can I find out how my information is being used?
No. You will not be told exactly which studies are using your samples and information. Not all participants' samples are used for every study. You are able to 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?
The Mayo Clinic SCAD Research Program isn't intended to produce final study results about any particular individual. However, if something potentially highly useful to you is discovered, you will be contacted to see if you choose to learn about this or not. In addition, any major findings will be published in the context of larger research reports.
Privacy and security questions
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 the Mayo Clinic SCAD Research Program?
Researchers from within Mayo Clinic and from collaborating research institutions across the world are the primary users of the samples and data from the SCAD Research Program.
Specimens are not released to any researcher until the proposed study has undergone a rigorous review and approval process by these committees:
- The Institutional Review Board (IRB), which ensures that all projects are ethical and appropriate.
- The Mayo Clinic Biospecimens Subcommittee of the IRB, which ensures that only the necessary amount of specimen is collected and used and that all specimens are used only for research that has been approved by the IRB.
Find out more about the Mayo Clinic IRB.