Dr Steven Cox explains how new, CRY-funded research (published today) raises the question of whether suddenly bereaved families are being correctly assessed
Alongside our pioneering screening programme and unique bereavement support network, research is central to CRY’s mission to prevent young sudden cardiac death.
There has been an overwhelming reaction – both in the UK and on an international level – to the publication of landmark research findings in the prestigious journal, JACC [Journal of the American College of Cardiology] calling for all families to be referred to specialist cardiology centres following the tragedy of a young sudden cardiac death.
The research, based at St George’s University of London, evaluated over 300 families who had been tragically affected by SADS (sudden arrhythmic death syndrome) over a 10-year period. The team evaluated 911 relatives. Of these relatives, 22% of them (42% of the families) were diagnosed with an inherited cardiac condition. The most common condition was Brugada syndrome, affecting 16% of all relatives (28% of families).
Dr Michael Papadakis, one of CRY’s lead authors on the paper told us: “This study highlights the absolute importance of comprehensively testing all first-degree relatives after a SADS death. In our study we showed that 97% of those relatives diagnosed with a specific cause of SADS, known as Brugada syndrome could have been missed if a specialist Ajmaline test was not routinely carried out.”
There’s little doubt that our Centre at St George’s is a global centre of excellence – where bereaved families will be seen quickly, have all tests done on the same day, and be seen together as a family unit. But it’s unacceptable that there may be families in other parts of the UK who are not receiving the same reassurance or treatment, at a time when they are already grieving – and reeling – from the sudden death of a young son, daughter, sibling.
It’s also the hub of our world leading screening programme – testing 27,000 young people every year – which strives to prevent these [often symptomless] tragedies occurring in the first place.
Today’s research therefore reinforces our long-standing belief that following a SADS death, it is vital that the bereaved family needs to be seen by an expert in these conditions. If they are offered an ECG alone by their GP or cardiologist, this is simply not enough.
As Professor Sanjay Sharma says, “Testing families at a specialist centre results in more relatives receiving treatment and lifestyle advice which could potentially save their lives, as well as receiving better emotional support, being treated by doctors who see families every day who have experienced these tragedies.
There are 600 young sudden cardiac deaths each year age 35 and under – surely the least we can do for bereaved families is to ensure they get the best possible care and that we are doing all we can to prevent any further tragedies.”
Full details of the landmark study; “The Diagnostic Yield of Brugada Syndrome After Sudden Death With Normal Autopsy”, can be found here.