A collaborative approach to SCAD research

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. You can be part of the solution and help others by participating in iSCAD 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. By 2026, our iSCAD network has grown to 29 sites. Additional institutions in new geographic areas will be added in the future.

If you are a patient at an iSCAD Registry institution, you can ask your cardiologist about becoming a participant. 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 a questionnaire. 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 the data coordinating center. Your data and images will be “deidentified,” so that your confidentiality is assured. 
If you are not a local patient at an iSCAD Registry site, you can still inquire about participating at the nearest site to you by calling or emailing the contact listed on this page.

There is no fee for you to participate in the 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.

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.

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.

The “i” has two important meanings. First, "i" represents the independence of the registry. Because the registry is funded by SCAD Alliance, an independent nonprofit, the data generated and the research published will be unique. Although SCAD Alliance is the steward of the data, a separate academic research organization is the data coordinating center that keeps the data secure and ensures the research will not be influenced by any particular institution. A publications committee of iSCAD Registry principal investigators and steering committee members oversees research project selection.

Your SCAD will be documented two ways. Your doctor will complete questionnaires to submit to the data coordinating center, 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 any health events that may occur.

Your deidentified data will be held by the independent data coordinating center SCAD Alliance has contracted. Only the statisticians and researchers at the data coordinating center and the iSCAD publications committee and collaborators affiliated with the iSCAD Registry can access the data. 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, SCAD Alliance contracts with the data coordinating center to store and manage the data. SCAD Alliance serves as the steward of the data through its relationships with the iSCAD Registry member sites and the data coordinating center.

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 the data coordinating center to generate the data required, conduct the research, and ultimately, submit the findings to an appropriate journal for publication.
You can read the published research of the iSCAD Registry in this section of our website:
https://scadalliance.org/iscad-publications/

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/

You can support the iSCAD Registry in two important ways: by participating in the clinical study and by making a donation. If you are near an iSCAD Registry 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, contact the site to see if a virtual visit is an option.)  If you would like to make a donation to support iSCAD Registry, click on this link: SCAD Alliance Research Fund