A collaborative approach to SCAD research
The mission of iSCAD Registry is to develop and maintain an independent, multi-center data repository to advance the pace and breadth of SCAD research around the world, toward the common goals of improving patient diagnosis and outcomes, and to accelerate scientific discovery. The coordinating center of iSCAD Registry is PERFUSE, an academic research organization under the direction of Dr. C. Michael Gibson. PERFUSE is well-known for its expertise in coordinating international multi-center clinical trials and also is a well-respected and experienced angiographic core lab. The iSCAD Registry is funded by SCAD Alliance.
If you represent a medical institution and would like more information about becoming an iSCAD Registry site, contact iSCAD steering committee members Dr. Esther Kim, Dr. Malissa Wood, Dr. Sahar Naderi or Katherine Leon: [email protected]
Participating iSCAD Registry Sites
The institutions listed below offer SCAD-specific clinics, programs and the opportunity to enroll in the iSCAD Registry. (The names of 14 additional sites will be released in 2019 as they achieve their institution’s Institutional Review Board (IRB) approval.)
University of Kentucky College of Medicine
Contact: Dr. Gretchen Wells, Gill Heart & Vascular Institute, (859) 218-6713
Vanderbilt University Heart and Vascular
Contact: Dr. Esther Kim, Vanderbilt SCAD Program, (615) 322-2318
FAQs about iSCAD Registry
What is a multi-center registry?
A multi-center registry like iSCAD is a collaborative research effort. Institutions that are interested in spontaneous coronary artery dissection (SCAD) and that care for SCAD patients on a regular basis can become participating centers. The iSCAD Registry launched in 2019 with more than a dozen partner centers. Additional institutions in new geographic areas will be added in the future.
What does the “i“ in iSCAD represent?
The “i” has two important meanings. First, it represents the independence of the registry. Because the registry is managed by PERFUSE Study Group, a stand-alone clinical trial organization in Boston, and funded by SCAD Alliance, an independent nonprofit, the data generated and the research published will be unique. The research will not be influenced by any particular institution. A publications committee of iSCAD member principal investigators will oversee research project selection.
Why should I join a clinical study of SCAD?
Finding answers for a complicated diagnosis like SCAD requires lots of research. The best, highest quality research involves as many patients as possible, with diverse experiences and health histories. Because SCAD has not been researched extensively yet, there is much to explore.
How do I participate?
If you are a patient at an iSCAD Registry member institution (see map or list on homepage [link included]), you can ask your cardiologist to join. He or she will talk with you about the registry, and may arrange for you to also talk with the clinical trials coordinator in charge of enrolling patients in the registry. Once you give your consent to become a member, you will complete several questionnaires. Your doctor also will complete a questionnaire about your SCAD and health history. All of this data and any imaging of your heart and/or other vascular concerns will be sent to PERFUSE. The data and images will be “deidentified,” so that your confidentiality is assured.
Do I have to pay to join iSCAD Registry?
No. There is no cost for you to participate in iSCAD Registry.
Who funds the iSCAD Registry?
SCAD Alliance, a 501c3 nonprofit based in Alexandria, VA, funds the iSCAD Registry through individual donations, fundraising campaigns, and grants. To learn more about SCAD Alliance, its mission and all of the nonprofit’s key programs, please visit www.scadalliance.org.
Will I get health care as a part of my participation?
No. You do not receive healthcare services as an iSCAD Registry participant. Continue to see your current doctors. The cardiologist who enrolls you in iSCAD Registry will discuss the research with you at your regular visits from time to time.
What kind of data is collected about my SCAD?
Your SCAD will be documented two ways. Your doctor will complete questionnaires to submit to PERFUSE, along with your imaging and test reports, at set intervals. You also will contribute data by completing questionnaires about your SCAD, your life after diagnosis, and future health events that may occur.
Who will see my data?
Your data will be held by the PERFUSE Study group in Boston. Only the statisticians and researchers on the iSCAD publications committee can access the data. It will not be shared with any other organization. Your data will never be sold.
Who owns the data?
The data is “owned” by SCAD Alliance; however, SCAD Alliance does not have access to the data or physically house the data. To ensure the data is independent and secure, the research coordinating center, PERFUSE Study Group, is the facility that stores and manages the data. SCAD Alliance serves as the steward of the data through its relationships with the iSCAD Registry member sites and PERFUSE.
How does it become published research?
The iSCAD site principal investigators actively enrolling participants are eligible to submit research ideas to the iSCAD Publications Committee. This independent committee will evaluate research proposals based on patient and clinician experience, gaps in the existing published research, and novel theories. The researchers who receive approval from the Publications Committee will then collaborate with PERFUSE to generate the data required, conduct the research, and ultimately, submit the findings to an appropriate journal for publication.
What if I have an idea about important areas of SCAD research?
As a patient, your thoughts about SCAD and key areas of research are welcome. Please share your ideas through this link: https://www.scadalliance.org/contact/
How can I support the research?
There are two important ways to support the iSCAD Registry: participating in the clinical study and making a donation. If you are near an iSCAD Registry member institution [link] and would like to participate in the clinical study, contact the principal investigator to schedule an appointment. (If you are not near a center, ask your own doctor if he or she is interested in becoming an enrolling center of the iSCAD Registry. New institutions are considered each year.) If you would like to make a fee-free donation to support iSCAD Registry, click on this link: SCAD Alliance PayPal GivingFund