For more than 30 years, Cardiac Risk in the Young (CRY) has been at the forefront of efforts to prevent sudden cardiac deaths in young people. Established in 1995, CRY has transformed the landscape of cardiac screening, research, and bereavement support in the UK and beyond. Through pioneering research, large-scale screening initiatives, and raising awareness, CRY has saved lives, supported affected families, and driven critical policy changes. This article explores CRY’s impact over the past three decades and its continuing efforts to prevent young sudden cardiac death (YSCD).
The Urgency of CRY’s Mission
YSCD is a tragic and unexpected event that claims the lives of seemingly healthy young individuals. Research indicates that in the UK at least 12 young people, aged 35 and under, die each week from cardiac conditions. Many of these deaths could be prevented through early detection and medical intervention. CRY was founded to address this issue by promoting awareness, offering cardiac screening, and supporting research.
Pioneering Cardiac Screening Programmes
CRY’s national cardiac screening programme has been one of its most significant contributions. Since its inception, CRY has screened more than 300,000 young people, identifying more than 1,000 individuals at risk of potentially fatal heart conditions and more than 3,000 with conditions that require monitoring to avoid complications in later life. CRY’s screening, overseen by leading cardiologists, uses electrocardiograms (ECG) as the primary test, supported by symptom evaluation and family history, with follow-up echocardiograms when necessary.
The ECG is a powerful tool for detecting cardiac conditions, as most young sudden cardiac deaths occur without prior symptoms. Studies show that systematic screening can detect serious conditions in approximately one in 300 young people tested, enabling early medical intervention and potentially life-saving treatments.
CRY’s screening programme is open to all young people aged 14–35, appointments can be booked at www.testmyheart.org.uk. The screening events are usually funded by families who have raised the funds in memory of a young person who has died, bringing screening events to communities across the UK.
Driving Groundbreaking Research
CRY has played a crucial role in advancing scientific knowledge of cardiac conditions in young people. The organisation has supported world-renowned researchers, including Professors Sanjay Sharma, Michael Papadakis, and Mary Sheppard, contributing to improved diagnostic techniques, risk stratification, and treatment strategies.
The international screening criteria published by Professor Sanjay Sharma et al. in 2017 represented a significant advancement in the field of sports cardiology and cardiac screening. These criteria provide a standardised approach for interpreting ECG results in young athletes, reducing the risk of false-positive diagnoses while improving the detection of life-threatening conditions. By refining the differentiation between normal physiological changes in an athlete’s heart and potential pathological abnormalities, these guidelines have improved the accuracy and effectiveness of screening programmes worldwide. The criteria have been instrumental in shaping screening protocols used by major sporting organisations and healthcare providers, enabling young athletes at risk of sudden cardiac arrest to be identified and managed appropriately (Sharma et al, 2017).
Professor Sheppard has recently published findings from more than 7,000 expert cardiac post-mortem investigations conducted at the CRY Centre for Cardiac Pathology (Sheppard et al, 2023). This research provides invaluable insights into the causes of YSCD, informing screening protocols and enabling earlier identification of at-risk individuals.
Supporting Bereaved Families
Beyond prevention and research, CRY provides vital support for families affected by YSCD. The sudden death of a young person from an undiagnosed cardiac condition devastates families who are faced with many unanswered questions. CRY’s bereavement support programme connects affected families, providing peer-to-peer support tailored to their unique needs.
A key aspect of CRY’s support is funding expert cardiac pathology investigations. These investigations help families understand the cause of death and provide crucial genetic insights for other family members who may be at risk. CRY also provides specialist advice for first degree blood relatives to ensure they are referred to specialist Inherited Cardiac Conditions Centres like the CRY Centre at St George’s Hospital.
Supporting Young People Living with Cardiac Conditions
The CRY myheart network (www.myheart.org.uk) plays a crucial role in supporting young individuals diagnosed with potentially life-threatening heart conditions. Adjusting to lifestyle restrictions, medical treatments, and the psychological impact of diagnosis can be overwhelming. The myheart network offers a supportive community where affected individuals can connect, share experiences, and receive expert guidance through specialised meetings, peer support, and educational resources.
Campaigning for Policy Change
CRY’s impact extends beyond screening and research; it has been a powerful voice for policy change in the UK. CRY has worked closely with the government, sports organisations, and medical institutions to improve awareness, education, and screening policies.
One major success has been the adoption of cardiac screening policies by many sporting organisations and governing bodies. Cardiac screening at an elite level in sport is a major step forward, however, CRY wants all young people to have the choice to have their heart tested. CRY now tests more than 30,000 young people each year, with more than 100,000 individuals who have registered an interest to be screened.
CRY has also campaigned for families affected by YSCD to be routinely referred to specialist Inherited Cardiac Conditions Centres and for major improvements in post-mortem procedures to ensure accurate and timely information for bereaved families.
Raising Awareness and Community Engagement
Public awareness campaigns have been instrumental in CRY’s success. Events like the annual CRY Heart of London Bridges Walk, charity runs, and fundraising initiatives have mobilised thousands of supporters, raising both funds and awareness about YSCD.
CRY’s engagement with schools, universities, and sports clubs has also been vital. Educational initiatives ensure that young people, parents, and educators recognise the warning signs of cardiac conditions and understand the importance of screening.
Looking Ahead: The Future of CRY’s Work
As CRY enters its 30th anniversary year, it continues to expand efforts to reduce YSCD. Future goals include increasing access to cardiac screening, enhancing research into inherited cardiac conditions, and expanding bereavement support services.
One of the biggest challenges in expanding screening is the role of specialist doctors in evaluating ECGs. CRY is exploring the potential of artificial intelligence to improve early diagnosis and screening efficiency. By integrating AI and technology with the knowledge gained through CRY’s research, the charity aims to revolutionise cardiac screening accessibility.
CRY remains committed to its mission: to prevent young sudden cardiac deaths through awareness, screening, research, and to support affected families. With continued advancements in medical science and growing public awareness, the vision of a future where no young life is lost to an undiagnosed cardiac condition is drawing closer.
Conclusion
Over the past 30 years, Cardiac Risk in the Young has transformed our approach to young sudden cardiac death. Through its pioneering screening programmes, groundbreaking research, dedicated bereavement support and ongoing campaign to raise awareness, CRY has prevented young sudden deaths and supported bereaved families. As it continues to grow and innovate, CRY’s work remains as vital as ever to save young lives.
Conflicts of interest
None.
Funding
None declared.
Editors’ note
For more information on Cardiac Risk in the Young (CRY) go to www.c-r-y.org.uk.
References
1. Sharma S, Drezner J, Baggish A, et al. International recommendations for electrocardiographic interpretation in athletes. J Am Coll Cardiol 2017;69:1057–75. https://doi.org/10.1016/j.jacc.2017.01.015
2. Sheppard M, Westaby J, Zullo E, et al. Sudden arrhythmic death and cardiomyopathy are important causes of sudden cardiac death in the UK: results from a national coronial autopsy database. Histopathology 2023;82:1056–66. https://doi.org/10.1111/his.14889
