Now as more data is collected from SCAD patients and fed into the research, those focussed directions can be identified. This then leads to publications, helping with increasing awareness, and there’s opportunities to influence the development of health guidelines so we’ve got information there that’s appropriate and relevant for SCAD patients.
So BeatSCAD encourages all SCAD patients to consider registering with the research team in Leicester. When you contact the SCAD registry you’ll be sent a consent form which gives permission to the researchers to request your medical records and critically your angiogram images from your treating hospital. This is a challenging step, it can be a rate limiting step but it’s really important for the research team to be able to confirm the diagnosis of SCAD from your angiogram.
So once that’s done and you’re confirmed as a participant you’d be asked to complete a questionnaire. This will collect your medical history information and specific details about your SCAD event. Depending on what the team is investigating and, crucially, what funding is available, some people may be contacted for further details or tests.
If you’re not contacted for a specific area of study then be assured that the information you provide is still extremely valuable. There’s lots of work happening; epidemiological studies that might be looking at recurrence risk, looking into pregnancy after SCAD and SCAD research is a global effort. Comparing how SCAD is managed in different countries is really important too.
BeatSCAD is determined to continue supporting Dr Adlam and the whole SCAD research team as they discover answers to the many questions we still have about SCAD. So thank you to the amazing research team in Leicester and to all study participants.