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 accelerating 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.
UCLA — University of California, Los Angeles
Los Angeles, CA
Contact: Dr. Tim Canan, UCLA (805) 642-6252
Kaiser Permanente — Northern California
San Francisco, CA
Contact: Dr. Sahar Naderi, Kaiser Permanente,
University of Colorado School of Medicine
Contact: Dr. Connie Hess, UC Health Heart & Vascular Center, (720) 848-5300 (Request an appointment with “Dr. Hess, in cardiology and vascular medicine, for SCAD.”)
Contact: Dr. Stephanie Saucier, firstname.lastname@example.org and Dr. Erika Zahina, email@example.com
University of South Florida
Contact: Dr. Daniela Crousillat, USF Health SCAD, (813) 821-8001
Contact: Dr. Bryan J. Wells, Emory University Hospital, (404) 686-8203
Johns Hopkins University
Contact: Dr. Jeff Trost, Johns Hopkins Bayview Medical Center, (443) 997-0270
Massachusetts General Hospital (MGH)
Contact: Dr. Malissa Wood, MGH SCAD Program, (866) 644-8910
Saint Luke’s Mid-America
Kansas City, MO and Overland Park, KS
Contact: Dr. Anna Grodzinsky, Saint Luke’s Muriel I. Kauffman Women’s Heart Center, 816-931-1883
Catholic Medical Center
Contact: Dr. Michelle Ouellette, Catholic Medical Center, (603) 669-0413 or firstname.lastname@example.org
Dartmouth-Hitchcock Medical Center
Contact: Dr. Stanislav Henkin, Dartmouth-Hitchcock Medical Center, (603) 650-5724
New York, NY
Contact: Dr. Sonia Tolani, Columbia Women’s Heart Center, (212) 326-8920
New York, NY
Contact: Dr. Daniella Kadian-Dodov, The Lauder Family Cardiovascular Ambulatory Center,
Atrium Health Sanger Heart & Vascular Institute
Contact: Dr. Esther Kim, (704) 373-0212 or Sanger Heart & Vascular Institute
Case Western Reserve — University Hospitals
Contact: Dr. Heather Gornik, University Hospitals, (216) 286-2354 or e-mail Dina.Dejanovic@UHhospitals.org, (216) 844-3898
Oklahoma City, OK
Contact: Dr. Raghav Gupta, Oklahoma Heart Hospital, (405) 608-3800 or email Andrea Richardson at email@example.com
Contact: Dr. Lori Tam, Providence St Vincent Clinics Cardiology (503) 216-2229
University of Pennsylvania Penn Medicine
Contact: Dr. Jennifer Lewey, Women’s Cardiovascular Health Program,
(800) 789-7366 (PENN)
University of Pittsburgh Medical Center
Contact: Dr. Kathryn Berlacher and Dr. Agnes Koczo, UPMC Heart & Vascular,
Vanderbilt University Heart and Vascular
Contact: Dr. Kathryn Lindley, Vanderbilt SCAD Program, (615) 322-2318
University of Texas–Southwestern
Contact: Dr. Dharam Kumbhani, Clinical Heart & Vascular Center, (214) 645-8300
Contact: Dr. James Orford, Intermountain Heart Institute, (801) 507-4701
University of Virginia
Contact: Dr. Angela Taylor, UVA Heart & Vascular Center, (801) 507-4701
Victor Chang Cardiac Research Institute
Contact: Prof. Jason Kovacic, Victor Chang SCAD Program, phone (02) 9295 8600
Frequently Asked Questions
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. By 2021, our iSCAD network has grown to 20 sites. Additional institutions in new geographic areas will be added in the future.
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.
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.
If you are a patient at an iSCAD Registry member institution listed above, 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.
There is no fee for you to participate in iSCAD Registry; however, the iSCAD site doctor who evaluates and enrolls you in the Registry will charge for the visit. Most insurances, though, will cover a second opinion. Please be sure to check with your insurance in advance of the visit.
SCAD Alliance, a 501(c)3 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 explore www.scadalliance.org.
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.
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.
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.
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.
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.
As a patient, your thoughts about SCAD and key areas of research are welcome. Please share your ideas through this link: https://scadalliance.org/contact/
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 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 donation to support iSCAD Registry, click on this link: SCAD Alliance Research Fund