SCAD is characterised by the presence of blood entering and separating the layers of the coronary arterial wall to form a false lumen. This leads to external compression of the true coronary lumen restricting coronary blood flow and leading to coronary insufficiency and myocardial infarction.
SCAD remains a devastating illness affecting often young, otherwise healthy, patients associated with poorly quantified but significant mortality, morbidity and healthcare costs. SCAD is a neglected area of knowledge regarding current European medical practice and as such represents a significant unmet clinical need for our patients. Predominantly it afflicts young women without conventional atherosclerotic risk factors. It has a disproportionate impact on these women, frequently with careers and young families.
There remain significant gaps in our knowledge of the epidemiology, presentation, current management and outcome for SCAD-survivors. Ultimately effective rare disease research requires a collaborative approach.
We are launching a EURObservational Research Programme (EORP) SCAD registry which aims to provide data on the epidemiology and outcomes of patients with this condition. This is of considerable importance as preliminary data from our US collaborators has suggested recurrent SCAD events and significant MACE may be more common than previously thought. By coupling information on clinical presentation and angiographic findings with patient management and clinical outcomes and combining data across countries, this study will enhance understanding of current best practice for the management of SCAD
The primary aims are to gather observational data on epidemiology, the clinical presentation, management and outcomes of SCAD patients. The secondary aim is to compare data between countries, to analyse and report these data as research publications and health reports to the wider ESC community. We shall then be able to build a collaborative infrastructure for future prospective clinical studies.
Currently the most contemporary diagnostic criteria for SCAD are summarized in the recent European Position Statement on SCAD drafted by the ESC-ACVC SCAD Study Group. For the purposes of study inclusion, the definition of SCAD will be based on a central review of the coronary angiographic images.
Approximately 30 countries and 120 sites will participate in this registry. 500 prospectively recruited patients and 500 historical cases will be enrolled.
- Patient data will be collected at the following time-points:
- First SCAD event visit (retrospectively on chart review)
- First follow-up: at time of enrolment
Yearly follow-up: for 5 years post enrolment
If you are interested in participating, please contact firstname.lastname@example.org.
If you would like to join other registries, please click on the link below to see the list of current registries that are recruiting:
The registry is managed by the SCAD Executive Committee.
The Executive Committee is co-chaired by: David Adlam (UK), Christiaan Vrints (BE), Fernando Alfonso (ES), Piera Capranzano (IT) and Angela H.E.M. Maas (NL).
Johannes Holfeld, Austria
Sofie Gevaert, Belgium
Alexandre Persu, Belgium
Micha T. Maeder, Switzerland
Peter Ong, Germany
Héctor Bueno Zamora, Spain
Javier Escaned, Spain
Pascal Motreff, France
Chris P Gale, United Kingdom
Corrado Lettieri, Italy
Andrzej Januszewicz, Poland
Eva Swahn, Sweden