15. SCAD Research
Much has been learned about SCAD in the last 5-10 years, as research teams around the world began to study small groups of patients. The Internet was a helpful tool in bringing patients and researchers together. This early data helped improve diagnosis and treatment of SCAD, but there is still a lot we don’t know. Patients want answers, and so do their physicians. To truly understand what causes SCAD and discover the best treatments, larger groups of patients must be studied. Researchers are motivated to conduct these clinical studies to help physicians identify and care for SCAD patients in a way that improves “outcomes,” meaning less damage to the heart and a better recovery.
To get the kinds of answers everyone wants, we need to be able to conduct extensive research on SCAD: what causes it (and what doesn’t); what kinds of treatments and interventions help (or don’t); and what should SCAD patients expect as they move forward with their lives?
Diseases or conditions that affect many people tend to be well-funded. Conditions like breast cancer, for example, have highly visible fundraising and support campaigns. But SCAD is different. It’s less common (though much less rare than we used to think) than a disease like cancer, so the mechanisms that drive SCAD research are different. To advance the science of rare diseases like SCAD, we need patient champions, advocacy groups, physician champions, and collaboration among them all to highlight the need for research. Today, social media facilitates awareness campaigns AND the mechanisms for research funding.
Fortunately, these efforts are happening more robustly now, thanks to many very engaged patients and their loved ones who are pushing for progress on SCAD research, as well as an ever-growing army of physician champions who are pushing for progress.
To conduct the best research on SCAD, we need quality data, derived from a large, representative population of patients. We need to ask the right questions, and ensure sound statistical analysis of the data. So, how do we find enough patients, patients who represent the whole, diverse SCAD patient population? And, how do we get unlimited funding, to make this kind of research happen?
Registries are a well-established way to collect data from large numbers of patients. Patients and their physicians send in de-identified medical records, along with information the registry asks the patient to provide (often in the form of surveys or questionnaires). Then that data is available for researchers to analyze, learn from, and use to write scientific articles to educate others.
Single-site SCAD registries have existed at some hospitals for several years and have added incredibly valuable information to our understanding of SCAD. More frequently around the world today, multi-site registries are hard at work on SCAD. In this model, a number of hospitals and health care centers participate in the registry, so that the registry can collect data from a larger, more geographically diverse sample at a faster rate. In addition, more investigators can be involved in analyzing the data to figure out potential solutions for SCAD diagnosis, treatment and prognosis.
So, whether you had your SCAD years ago, or you’re a recent survivor, you can take comfort in knowing that researchers around the world are making great progress investigating SCAD. Research takes time to do well, but our understanding of SCAD is growing each day. Please consider participating in a clinical registry or other SCAD-specific study if you haven’t yet done so. For more information about SCAD-related studies, go to this website:
