March 19, 2023
Interview with Dr. Sharonne Hayes – Part 1
Mayo Clinic SCAD Research Program Team Lead
Prior to kicking off this year’s fundraising efforts we asked Dr. Sharonne Hayes, Mayo Clinic SCAD Research Program Team Lead, several questions about Mayo Clinic’s SCAD Research Program. She began by saying:
“The support from SCAD Research Inc (SRI) has really kept our work going and has accelerated novel SCAD research over a short period of time. Without SRI support, we would have not advanced nearly as quickly, especially as we work to take this to the next level regarding sustainability and NIH [National Institute of Health} funded prospective studies.”
Question 1: What registries do you currently maintain?
Mayo Clinic has two related SCAD Registries, both of which have the same eligibility requirements. The main registry now has over 1500 participants. Anyone eligible for the primary/main registry may also be offered the opportunity to participate in the Mayo Clinic SCAD Biobank and contribute a DNA sample.
We also include in that registry the DNA of select family members, depending on the need and family history of SCAD. We have also leveraged the Rochester Epidemiology Project data when population-based data is needed to answer our research questions.
We recently received IRB approval for a prospective SCAD study led by Dr. Tweet in collaboration with the Mayo Clinic Human Integrative Laboratory. This study is funded by the National Institutes of Health (NIH) and builds upon work already conducted as part of the registry. Much of the evidence included in that research proposal were from publications based on the findings from the Mayo Clinic SCAD Registries, supported by SCAD Research, Inc.
Question 2: Do you share registry information with other research institutions?
Mayo Clinic protects the privacy of its research participants, so the actual registry as a full database is never shared without specific permission from the individual participant(s).
That said, Mayo Clinic SCAD Registry data that has been deidentified to protect the participants’ privacy has been shared in a number of collaborative research studies and publications.