Spontaneous Coronary Artery Dissection (SCAD) Research Program

Overview

What is SCAD?

Spontaneous coronary artery dissection (SCAD) is an increasingly recognized cause of heart attack and sudden cardiac death. But it remains poorly understood. Many patients with SCAD are relatively healthy, young or middle-aged women who don't have the usual risk factors for heart disease. This is different from those who have typical atherosclerotic heart attacks.

Researchers are still learning about how often SCAD occurs, what causes it, how often it recurs and how to manage it. Limited evidence is available to guide medical professionals caring for patients with SCAD. Even fewer reliable sources of information are available to patients and families. Although the work that Mayo Clinic SCAD experts have published has dramatically changed medical care for people with SCAD, much remains to be learned.

About the SCAD Research Program

Mayo Clinic formed the Spontaneous Coronary Artery Dissection (SCAD) Research Program in 2010. The program brings together experts from different medical specialities who work together to learn the causes of and risk factors for SCAD. The research program also works to create solutions to diagnose, treat and prevent SCAD.

The program was created in response to survivors of SCAD who were using social media to collect data, share their experiences and push for research about the condition. The study population is the largest known SCAD registry in the world. Researchers continue to recruit participants via social media, referrals from healthcare professionals and other methods.

The program takes a new and unique approach to patient-initiated rare disease research, using registries, full reviews of participant data, genetic analyses, advanced medical imaging and other collaborative work. The research is based on a database registry and a DNA and plasma biobank that were created specifically for the program. This approach, which involves research colleagues from across Mayo and at organizations around the world, has already enhanced scientific knowledge and improved the care of patients with SCAD.

The SCAD Research Program studies the genetic causes of SCAD and the changes that happen in people's bodies when they have SCAD. Researchers also look for the best treatments. The research program continually builds its knowledge and clinical expertise. Mayo researchers and their collaborators seek to inspire hope and improve the health and well-being of patients with SCAD.

The SCAD Research Program works closely with patients and research participants. The program aims to provide answers for people with SCAD, as well as their families and healthcare teams. These answers are needed to guide decisions and deliver the best possible healthcare.

Registry and biobank

The Mayo Clinic SCAD Research Program Registry collects data for understanding SCAD, including detailed clinical data and patient-centered outcomes.

The Mayo Clinic SCAD Research Program Registry contains data from more than 1,500 participants with confirmed SCAD. More participants have been screened, had their SCAD diagnoses confirmed and formally agreed to take part in the study, but have missing data. The research team continues to work to complete these patients' records.

The program's DNA and plasma biobank is made up of samples from patients with SCAD and their parents. Researchers use the biobank to look for gene changes that cause SCAD.

The SCAD Research Program has enrolled far more than the estimated number of participants. This shows that SCAD is not as rare a condition as previously thought and is likely underdiagnosed.