CRY invests £300,000 to advance understanding of genetic silent killer – young sudden cardiac death

Press release – 1st March 2007

Two years on from publication of the NHS Chapter 8 strategy on Arrhythmias and Sudden Cardiac Death, leading charity Cardiac Risk in the Young (CRY), has committed to fund coroner referrals to an expert cardiac pathologist when a young person dies suddenly and the cause is unknown.

This offer of expert help to coroners provides an essential service for affected families. It will ensure they receive a cause of death, but also enables identification of other family members at risk of having a similar genetic condition. This will build on the 3 year grant of £180,000 from CRY received by expert cardiac pathologist Dr Mary Sheppard in 2006 to establish a research centre at the Brompton Hospital, specialising in young sudden cardiac death (YSCD).

Dr Sheppard is a leading academic and expert cardiac pathologist and will be collaborating with other experts in the field of cardiac pathology to provide this essential service. It is estimated that there are at least 400 young deaths each year resulting from these conditions.

Coroner Bill Dolman says: “As Medical Secretary of the Coroners Society of England and Wales I warmly welcome the expert help being offered to coroners in investigating these unexpected, tragic deaths. I am sure my colleagues will want me to thank CRY for arranging and funding this important initiative. Although small in numbers, these sudden unexpected deaths cause immense distress to families.”

Without expert pathology, families suffer the agony of not receiving answers to the cause of their tragedy and remain unaware of the genetic implications. When inquests are opened there can be interminable delays as coroners try to find the reason for the cause of death. This project will end this unnecessary distress and bring closure for the family allowing them to focus on the first difficult steps of the reconstruction of their lives after their loss.

Alison Cox, Founder and Chief Executive of CRY, says: “We have debated the problem for 2 years now. The reality is that the NHS currently faces a funding crisis. Although this is not a government priority it is ours. We talk to affected families daily and our job is to try to mitigate their distress at this terrible time. These are genetic conditions and ensuring that the family are referred to cardiac specialists after their tragedy is crucial. Our offer of expert help for the coroners will release the current gridlock.”

CRY’s commitment to fund this essential service is acknowledged as one of the most important developments since the publication of Chapter 8 and marks a monumental step forward in getting to the root causes of these conditions

Professor Gaetano Thiene, President of the Association for European Cardiovascular Pathology, whose research in the Veneto Region of Italy first alerted the world to the issue of young sudden cardiac death said: “This news is exciting and I congratulate and greatly admire CRY for taking this initiative. The role of pathology is an important and rewarding one and Dr Mary Sheppard is an excellent choice to drive this project forward. The CRY pathology initiative will certainly be a great step forward for the prevention of juvenile sudden death in the United Kingdom. I very much support this important project and the experience we gathered in the Veneto Region of Italy will be at Dr Sheppard’s disposal.”

Dari Taylor MP’s Private Members’ Cardiac Risk in the Young Screening Bill supported by CRY in March 2004 was instrumental in securing the implementation of Chapter 8 into the National Service Framework in March 2005.

This sets out guidelines on how NHS services should identify and manage those at risk of YSCD. However a survey carried out in March 2006 by CRY showed that a staggering 97 per cent of all Primary Care Trusts (PCT’s) said they had failed to develop a strategy for implementing any of the new NHS guidelines outlined in Chapter 8. Yet progress is now being made. Encouragingly, a further survey conducted in November 2006 by CRY, in partnership with the All Party Parliamentary Group for Cardiac Risk in the Young, has shown that 13 PCT’s are now taking active steps to review and improve their services as a result of Chapter 8.

CRY has recently been appointed by the Department of Health as co-chair of the Sudden Cardiac Death Group, demonstrating its level of expertise in understanding and researching the causes of YSCD. CRY’s clinical excellence is overseen by Dr Sanjay Sharma, newly appointed Director of Heart Muscle Disease at Kings College Hospital London. The work conducted by CRY, Dr Sharma and renowned sport scientist Professor Greg Whyte, has enabled important research into the subject, including a focus on the effect of ethnicity on ECG results, prevalence of cardiac disease in the young and the screening of athletes.

CRY works to diagnose the various conditions that cause YSCD by running its own screening programme and currently have a number of centers throughout the UK, with another 5 centres planned 2007. CRY also screens in schools, in sports clubs and has raised over £400,000 for cardiac medical equipment in hospitals and GP surgeries.

Another vital part of CRY’s campaign is to raise awareness of these conditions with the help of prominent patrons such as David Walliams, Sir Steve Redgrave and Ian Botham.


For more information, photographs, or to attend the launch please contact Tom Fern, Alice Perry or Jo Sheperd on 0870 240 5536, or email

* Young people refers to those 35 and under

Notes to editors:

  • CRY is a charity founded in May 1995 to raise awareness of Cardiac Risk in the Young – Sudden Cardiac Death, Sudden Death Syndrome (SADS)
  • CRY offers bereavement support to those who have suffered a tragedy through a network of specially trained individuals who have themselves suffered a similar loss
  • CRY promotes heart screening, ECG Testing Programmes & contributes to medical research
  • CRY funds the CRY Centre for Sports Cardiology at the Olympic Medical Institute
  • CRY’s newest patron is highly acclaimed Little Britain comedian, David Walliams