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Research Highlights 2013 Professor Sanjay Sharma, CRY’s consultant cardiologist CRY’s research programme is overseen by Professor Sanjay Sharma. Sanjay is Professor of Inherited Cardiovascular Disease and Sports Cardiology at St George’s Hospital, London; Virgin Money London Marathon Medical Director; and was the London 2012 Olympic Cardiologist. CRY’s Research Fellowship Programme funds doctors for 2 years who choose to specialise in the field of inherited cardiac diseases, sudden cardiac death, screening and sports cardiology. There are currently 6 CRY Research Fellows at St George’s Hospital who spend 50% of their time in NHS clinics and their remaining time is divided between screening and research. As well as the fellows CRY are currently funding, 13 more fellows have been trained by CRY and are now working in the NHS throughout the UK. During 2013, CRY Research Fellows published more than 17 papers in leading cardiology journals. One issue faced by cardiologists is the overlap between what normally happens to the heart with exercise versus a diseased heart muscle. In addition to this, one of the big issues about screening, certainly what the antagonists argue, is that screening with ECG is associated with a lot of false positive results which can cause unnecessary anxiety. Inside this issue Several papers this year have addressed these issues and provided data that should lead to more stringent testing p2 Research Awards criteria; reducing false positive results, allowing for more p3 CRY International Conference accurate diagnostic protocols and informing guidelines. p4 British Cardiovascular Society

Conference CRY’s Research Programme p5 Interviews p6 Research CRY’s research programme is focused on screening in the p8 CRY’s Research History

general population, elite athletes and cardiac pathology. It is our unique expertise in sports cardiology and how athleticism, ethnicity and gender affect the ECG that enables us to conduct screening on a general population level. To test young people you need to understand the results of ALL young people. It is CRY’s expertise in sports cardiology that gives us the authority to take forward screening in the UK. Thousands of young people aged 14-35 years have been evaluated, resulting in many ‘firsts’ in the scientific literature. CRY were first to: • provide information on the physiological upper limits of cardiac dimensions in adult British national level athletes (published in European Journal of Applied Physiology) • characterise cardiac dimensions in a large cohort of adolescent athletes, who are most vulnerable to sudden death during sport from cardiomyopathy (landmark studies in the Journal of the American College of Cardiology and Heart are the main international studies on this subject) • state the prevalence and significance of an isolated long QT interval in elite athletes. This study has called for the revision of consensus guidelines published by the American College of Cardiology • describe the prevalence of hypertrophic cardiomyopathy (HCM) in elite athletes • CRY Research Fellows wrote the first paper on ECG changes in adolescent athletes when 1,000 athletes were studied (published in the British Journal of Sports Medicine and is a blueprint for the European Society of Sports Cardiology) • CRY performed the only study on cardiovascular adaptation in athletes of West African origin. Results show that ECGs in black athletes are quite different to those in white athletes and could be mistaken for serious cardiac disorders. CRY’s future aims include the identification - and determining the precise prevalence - of cardiac disorders capable of causing sudden death in asymptomatic and apparently healthy individuals; and accurately assessing cost implications if such a programme were implemented nationally.

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Research Awards The Pete Hinchliffe Travel Award for Medics The Pete Hinchliffe Travel Award for Medics 2012 was awarded to Dr Abbas Zaidi. He was awarded the prize in 2013, in recognition of being the most outstanding CRY Research Fellow throughout 2012. The award provides a grant of £1,000 to allow Dr Zaidi to travel to international conferences to showcase his research findings and learn from his counterparts in the global cardiology community. The award was created by the family of Pete Hinchliffe who died suddenly in 2010 (aged 33), whilst out cycling, from previously undiagnosed arrhythmogenic right ventricular cardiomyopathy (ARVC). The Hinchliffe family hope that the travel award named after him will help his memory live on and prevent other families from going through what they did. On receiving the award, Dr Zaidi said: “It came as a very pleasant surprise to me and I’d like to thank the Hinchliffe family. Of course, the fact that this award exists has come about through tragic circumstances, but it’s very generous of the family to maintain an interest in CRY and in fostering research that will help other families, and hopefully prevent sudden deaths. It was a great honour for me to receive the award.” “During my time with CRY, I saw a lot of patients – I have personally screened in the order of 5,000 individuals in the 3 years I was with CRY. The expertise that you get in interpreting the ECGs of young people is really unique.” “I also assessed families of victims of sudden death at CRY’s clinics. You learn to empathise with the patient and put yourself in the place of the patient. You do build relationships with the families, but at the same time you have to remain professional and objective. So it’s that mix of empathy and understanding and professional distance, if you like. Not to get too attached, not to get too upset or emotional. Although that can be difficult with families that have experienced a bereavement.” “I really enjoyed the 3 years. It’s been a great experience, a great ‘family’ that you join. And you feel once you leave the group, you’re not leaving the ‘family’. I hope to continue to work in contact with CRY in the future and develop services for inherited heart diseases, screening and sports cardiology in Wales, where I am now based.” Go to www.c-r-y.org.uk/hinchliffe_travel_award.htm to watch a video of Dr Abbas Zaidi and Professor Sharma discussing the research conducted during his CRY fellowship.

Other CRY Research Fellow Awards in 2013 Dr Sabiha Gati won a Best Poster award at the EuroPRevent 2013 conference, for her abstract “The prevalence of aortic root dilation in highly trained athletes”. Dr Greg Mellor won third prize in the abstract competition at the Annual Scientific Meeting of the Cardiovascular Research Centre, St. George’s University of London, for his abstract “Clinical Characteristics and Circumstance of Death in the Sudden Arrhythmic Death Syndrome”. Dr Abbas Zaidi was the recipient of the Alan Williams Prize 2013, Welsh Cardiovascular Society Spring Meeting April 2013, for his abstract “Physiological right ventricular adaptation in elite athletes of African and Afro-Caribbean origin”. 2

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CRY International Conference The 8th CRY International Conference was held in London on October 11th – 12th. The annual conference attracts expert speakers and delegates from around the international medical community to present contemporary topics and developments on sports cardiology and young sudden cardiac death. The agenda for the two day conference was ‘Sports Cardiology: From Theory to Practice’. Cardiovascular research of the athletic population is crucial to both assessing and preventing instances of young sudden cardiac death (YSCD) in both athletic and non-athletic individuals. The conference allows medical professionals to gain up-to-date knowledge relating to the effects of athletic training and the accurate diagnosis of life-threatening cardiac conditions. As part of the first session entitled ‘Evaluating the elite athlete’s ECG’, Dr Nabeel Sheikh opened the conference with a presentation on athletes with ECG T-wave inversions, followed by presentations on the ECG assessment of bradycardia in athletes from Dr Hari Raju and ion channel disease signifiers from Dr Elijah Behr. ECG screening is a quick, inexpensive test for identifying electrical cardiac irregularities, and research into the abnormalities more common in athletic hearts is crucial to improve the effectiveness of the ECG as a diagnostic tool. A highlight of the first day was Professor Sanjay Sharma’s four case studies discussing the exhibition of common symptoms in patients with more sinister underlying conditions. Professor Sharma stressed that the 12-lead ECG is a useful tool for diagnosis with correct interpretation and that early recognition saves lives. We were also honoured to be joined by Professor Mats Borjesson, who gave an explanation of the importance of emergency action plans in exercise environments to react to sudden cardiac arrest. Research into sudden cardiac death in children under fourteen is underdeveloped due to the rarity of occurrence, but as Professor Sharma and Dr Steve Cox explained in the second day’s morning session ‘Sudden cardiac death in the young’, the cost of the death of a young person is huge when considering the decades of life lost. Dr Graham Stuart examined the importance of screening young athletes under fourteen and detecting inherited cardiac conditions early. Dr Navin Chandra’s afternoon presentation reviewed the challenges to overcome with the proposed universal screening of young athletes across the UK. This emphasised the crucial importance of the medical research exhibited at the conference, as greater understanding will reduce unnecessary investigations and increases the viability of nationwide screening. All of the presentations were filmed and the videos will be available from the CRY website, adding to the valuable resource of cutting-edge research already presented at this conference.

Cardiac Risk in the Young

Day 1 - Friday 11th October Athletes with ECG abnormalities: Beyond T-wave inversions. Dr Nabeel Sheikh. Investigation and management of the “slow” heart: Physiology vs. pathology. Dr Hari Raju. Challenges of diagnosing ion channelopathies in athletic individuals. Dr Elijah Behr. Common symptoms due to rare conditions. Professor Sanjay Sharma. Exercising in a safe environment: Current state and future directions. Professor Mats Borjesson (Sweden). The significance of myocardial fibrosis in athletic individuals. Dr Rory O’Hanlon (Ireland). Challenges of the athlete’s post-mortem: Establishing the cause of death. Professor Mary Sheppard. How much exercise do we really need? Professor Jamie Timmons. Left ventricular hypertrabeculation: Another phenotype of the athletic heart? Dr Sabiha Gati. Day 2 - Saturday 12th October Overview of sudden cardiac death in the young. Professor Sanjay Sharma. Sudden cardiac death in the young: An underestimated entity. Dr Steve Cox. Sudden cardiac death in young athletes: Need for a uniform registration. Dr Erik Solberg (Norway). Cardiovascular screening of children (<14 years). Dr Graham Stuart. Cardiopulmonary exercise testing: Parallels between the athlete and the cardiopulmonary patient. Dr John Buckley. Echocardiographic assessment of the athlete’s heart: Proposed protocol. Dr Abbas Zaidi. Chamber dilatation versus cardiomyopathy. Professor Domenico Corrado (Italy). Impact of nationwide ECG screening in young individuals in the UK. Dr Navin Chandra. Evaluation of the amateur athlete. Dr Michael Papadakis.

To find out more about CRY’s International Conference visit www.c-r-y.org.uk/conferences.htm Research Highlights 2013

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British Cardiovascular Society Conference The 2013 British Cardiovascular Society (BCS) Conference, held from June 3rd – 5th, was an invaluable opportunity for CRY to demonstrate the charity’s importance to cardiovascular research and further add to the discussions surrounding young sudden cardiac death (YSCD) and screening for cardiac conditions in young people aged 35 and under. The BCS Conference is an international stage for cardiologists in the UK to show their research and discuss its implications for the future diagnosis and treatment of patients with cardiac conditions. Current and former CRY Research Fellows, under CRY Consultant Cardiologist Professor Sanjay Sharma, gave a series of well-attended poster presentations over the three days at the busy CRY stand – proving the value of the research grants CRY provides to fund ground-breaking investigations into cardiovascular disease, sports cardiology and screening. Important presentations at the CRY stand included several examples of ongoing research into athletic cardiology. Dr Nabeel Sheikh gave two presentations demonstrating the challenges of discerning between cardiomyopathy and adaptation to exercise in athletic hearts, while Dr Saqib Ghani used data from screenings of the Rugby League and Great Britain’s Olympic team to infer conclusions about the screening of elite athletes. Dr Ghani also discussed right ventricular adaptation in athletes, Dr Navin Chandra showed the effect of ethnicity on the athlete’s ECG and Dr Michael Papadakis used his first poster presentation of the conference to offer a guide to echocardiographic assessments of the athletic heart. There were also several research presentations on the recognition and diagnosis of sudden cardiac death, with specific discussion on the interpretation of an autopsy following sudden cardiac death from Dr Papadakis and the screening of the family of sudden arrhythmic death syndrome (SADS) victims from Dr Hari Raju. Dr Raju also gave a more specific presentation on his research into Brugada syndrome, while Dr Sabiha Gati explained her ongoing research into left ventricular trabeculation. CRY Patron Andrew Triggs-Hodge MBE, who had recently won his second gold medal in the 2012 London Olympics, was kind enough to make himself available for a live demonstration in the conference auditorium chaired by Professor Sanjay Sharma and Professor Greg Whyte. Dr John Buckley of Chester Hospital demonstrated further research into cardiopulmonary exercise testing (CPET) to show variations in an individual’s V02 max, the upper capacity of the body to transport and use oxygen during exercise. The CPET performance of Andrew Triggs-Hodge on a rowing machine was compared with that of Dr James Hubbard, who suffers from dilated cardiomyopathy (DCM), on a cycling machine. CRY’s committed involvement in the 2013 BCS Conference has further helped to raise awareness amongst leading medical professionals of the importance of investigating the causes and prevention of young sudden cardiac death (YSCD).

CRY intend to be exhibiting at the BCS Conference 2014 at the Manchester ExCeL Centre June 2nd – 4th 4

Research Highlights 2013

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Interviews Edited excerpts from an interview with Dr Abbas Zaidi, who was a CRY Research Fellow from 2010 to 2013, about his article “Physiological Right Ventricular Adaptation in Elite Athletes of African and Afro-Caribbean Origin” which was published in ‘Circulation’ in April 2013. Read the full interview at www.c-r-y.org.uk/abbas_circinterview.htm “We know that when people do regular exercise there are certain changes in the heart: the wall of the left ventricle gets thicker and the left ventricular cavity size gets bigger. No-one has actually looked at what happens to the right ventricle of black athletes, so this project was looking at right ventricular adaptation in black athletes. There have been some papers within the last few years looking at what happens to the right ventricle when people do exercise, and it has been found that the right ventricle also enlarges with regular exercise. Now, the healthy athlete’s right ventricle can get bigger to the extent that it can start to look like a diseased ventricle; a condition called arrhythmogenic right ventricular cardiomyopathy (ARVC). That’s not to say that doing exercise will cause this condition but, if you exercise and the right ventricle gets bigger, it can cause confusion as to whether you are just seeing healthy enlargement of the heart or whether you’re seeing a disease. There was an editorial published in ‘Circulation’ at the same time that we published this paper. That editorial was written commenting on our paper, and one of the things that the editorial pointed out is that the current guidelines for diagnosing ARVC are perhaps going to have to be changed and our paper may well be contributing to changes in the guidelines. The guidelines at the moment would state that if you have an enlarged right ventricle and these T-wave inversions you may have ARVC, but the data here is suggesting that that’s not necessarily the case for black athletes. It also emphasises the fact that screening needs to be done by people who have expertise in sports cardiology, who have expertise in what happens to the ECG of people who exercise regularly. If it is not done in an expert setting or by people with experience of these changes then we may well get a large number of false positives which can cause problems.”

Edited excerpts from an interview with Dr Navin Chandra, who was a CRY Research Fellow from 2008 to 2010, about his article “Sudden Cardiac Death in Young Athletes: Practical Challenges and Diagnostic Dilemmas” which was published in ‘Journal of the American College of Cardiology’ in March 2013. Read the full interview at www.c-r-y.org.uk/navin_jaccinterview.htm “The article was published as a ‘state-of-the-art paper’ which basically means it’s a review article written by experts in a particular area so that they can provide their own insight and experience on a given area of cardiology. The main aims of the article were to provide detailed information on sudden cardiac death in young athletes. We focused on the most common conditions and how to identify them, ranging from how they present in terms of their symptoms to how to use different tools to investigate and diagnose them. In both Europe and the US there is a consensus opinion that we should be screening athletes for conditions capable of causing sudden cardiac death. What this paper shows is that, if you are screening athletes, it may not always be as straightforward as the guidelines might suggest. Our own experience shows the kind of challenges that you might face - particularly in terms of differences between athletes and the overlaps between cardiomyopathy and physiological adaptation to exercise. When it comes to evaluating athletes you may have to make a decision on whether you think somebody should or shouldn’t be allowed to continue participating in sport because you’re worried they might have a problem predisposing them to sudden cardiac death. So I do think this needs to be done by a specialist in the field. You need to have people that have experience of evaluating athletes and are familiar with looking at their ECGs and ECHO findings. You also need doctors who have experience of managing patients, who aren’t athletes, who actually have cardiomyopathy or ion channel problems of their heart and even experience of evaluating people that may have been affected by sudden death in their families.”

You can read interviews with our Research Fellows at www.c-r-y.org.uk/research_fellow_interviews.htm Cardiac Risk in the Young

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Research Published Papers • Sheikh, N., Cox, A. and Sharma, S. “Support for inclusion of electrocardiography in addition to the Health Questionnaire and Physical Examination in athletic screening protocols for diagnosis of unsuspected hypertrophic cardiomyopathy.” The American Journal of Cardiology. January 2013. • Sheikh, N., Papadakis, M., Carre, F., Kervio, G., Panoulas, V.F., Ghani, S., Zaidi, A., Gati, S., Rawlins, J., Wilson, M. and Sharma, S. “Cardiac adaptation to exercise in adolescent athletes of African ethnicity: an emergent elite athletic population.” British Journal of Sports Medicine. January 2013. • Zaidi, A. and Sharma, S. “Exercise and heart disease: from athletes and arrhythmias to hypertrophic cardiomyopathy and congenital heart disease.” Future Cardiology. January 2013 Vol. 9, No. 1, p119-136. • Gati, S., Chandra, N., Bennett, R.L., Reed, M., Kervio, G., Panoulas, V.F., Ghani, S., Sheikh, N., Zaidi, A., Wilson, M., Papadakis, M., Carré, F., Sharma, S. “Increased left ventricular trabeculation in highly trained athletes: do we need more stringent criteria for the diagnosis of left ventricular non-compaction in athletes?” Heart. February 2013. • Chandra, N., Bastiaenen, R., Papadakis, M. and Sharma, S. “Sudden Cardiac Death in Young Athletes: Practical Challenges and Diagnostic Dilemmas.” Journal of the American College of Cardiology. March 2013 Vol. 61, Issue 10, p1027-1040. • Wong, L.C.H. and Behr, E.R. “Familial cardiological evaluation in sudden arrhythmic death syndrome: essential but challenging.” Europace. March 2013. • Gati, S., Papadakis, M., Van Niekerk, N., Reed, M., Yeghen, T. and Sharma, S. “Increased left ventricular trabeculation in individuals with sickle cell anaemia: Physiology or pathology?” International Journal of Cardiology. April 2013. • Zaidi A., Ghani S., Sharma R., Oxborough D., Panoulas V.F., Sheikh N., Gati S., Papadakis M. and Sharma S. “Physiological Right Ventricular Adaptation in Elite Athletes of African and Afro-Caribbean Origin” Circulation. April 2013. • Luijkx, T., Cramer, M.J., Buckens, C.F., Zaidi, A., Rienks, R., Mosterd, A., Prakken, N.H.J., Dijkman, B., Mali, W., and Velthuis, B.K. “Unravelling the grey zone: cardiac MRI volume to wall mass ratio to differentiate hypertrophic cardiomyopathy and the athlete’s heart.” British Journal of Sports Medicine. June 2013. • Sheikh, N. and Sharma, S. “A young athlete with bradycardia.” British Medical Journal. July 2013. • Gati, S., Sheikh, N., Ghani, S., Zaidi, A., Wilson, M., Raju, H., Cox, A., Reed, M., Papadakis, M. and Sharma, S. “Should axis deviation or atrial enlargement be categorised as abnormal in young athletes? The athlete’s electrocardiogram: time for re-appraisal of markers of pathology.” European Heart Journal. September 2013. • Hill, S.F. and Sheppard, M.N. “A silent cause of sudden cardiac death especially in sport: congenital coronary artery anomalies” British Journal of Sports Medicine. September 2013. • Sharma, S. “Our Studies Have Comprehensively Characterised the Spectrum of Electrical and Structural Changes in Black Athletes, and Our Data Are Beginning to Inform Major Guidelines in Sports Cardiology.” Circulation (European Perspectives). September 2013. • Zaidi, A., Ghani, S., Sheikh, N., Gati, S., Bastiaenen, R., Madden, B., Papadakis, M., Raju, H., Reed, M., Sharma, R., Behr, E. R. and Sharma, S. “Clinical significance of electrocardiographic right ventricular hypertrophy in athletes: comparison with arrhythmogenic right ventricular cardiomyopathy and pulmonary hypertension.” European Heart Journal. September 2013. • Zaidi, A. and Sharma, S. “Reduced mortality in former Tour de France participants: the benefits from intensive exercise or a select genetic tour de force?” European Heart Journal. September 2013. • de Noronha, S.V., Elijah R. Behr, E.R., Papadakis, M., Ohta-Ogo, K., Banya, W., Wells, J., Cox, S., Cox, A., Sharma, S. and Sheppard, M.N. “The importance of specialist cardiac histopathological examination in the investigation of young sudden cardiac deaths” Europace. October 2013. • Sharma, S. “Require Young Athletes to Undergo Cardiac Screening before Participation in Sports.” (in ‘Clinical Decisions - Cardiac Screening before Participation in Sports’) The New England Journal of Medicine. November 2013. • Jongman, J.K., Sheikh, N., Zaidi, A. and Sharma, S. “Recurrent repolarisation abnormalities in an athlete.” Netherlands Heart Journal. November 2013. • Sharma, S and Sheikh, N. “Cardiovascular function in elite athletes”. In: Montgomery H, Budgett R (Eds). In Celebration of the Olympics. Proceedings of a symposium and the Jephcott Lecture held at the Royal Society of Medicine on 9 May 2012. London, RSM Press, 2013. 6

Research Highlights 2013

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Research National Guidelines • Oxborough, D., Zaidi, A., Gati, S., Papadakis, M., Sheikh, N. and Sharma, S. “A Guideline for the Practice of Echocardiography in the Cardiovascular Screening of Sports Participants: A Joint Policy Statement of the British Society of Echocardiography and Cardiac Risk in the Young.” British Society of Echocardiography. May 2013. • Oxborough, D., Zaidi, A., Sharma, S. and Somauroo, J. “The Echocardiographic Assessment of the Right Ventricle with particular reference to Arrhythmogenic Right Ventricular Cardiomyopathy – A Protocol of the British Society of Echocardiography.” ECHO - Journal of the British Society of Echocardiography. May 2013, p12-18.

Posters • Mellor, G.J., Raju, H., de Noronha, S.V., Papadakis, M., Sharma, S., Behr, E.R. and Sheppard, M.N. “Clinical Characteristics and Circumstance of Death in the Sudden Arrhythmic Death Syndrome.” Annual Scientific Meeting of the Cardiovascular Research Centre, St. George’s University of London, December 2013. • S. Gati, C. Sedgwick, M. Papadakis, M. Reed, A. Zaidi, N. Sheikh et al. The prevalence of aortic root dilatation in highly trained athletes: ‘The British Experience.’ EuroPRevent, Rome, April 2013.

Presentations • Gati, S., “Left ventricular hypertrabeculation in athletes: Epiphenomenon or potential cardiomyopathy.” EuroPRevent, Rome, April 2013. • Gati, S., Masterclass in Sports Cardiology. “Imaging in arrythmias - valvular and cardiac diseases. Guided presentation to imaging testing, diagnosis and management of selected cases.” EuroPRevent, Rome, April 2013. • Gati, S., Increased Left Ventricular Trabeculation in African/Afro-Caribbean Individuals. An Epiphenomenon or True Cardiomyopathy? CRY International Conference, London, October 2013. • Gati, S., “Case Studies in sports cardiology”. The FA Cardiac Masterclass, London, December 2013. • Malhotra, A., “Case Studies in sports cardiology”. The FA Cardiac Masterclass, London, December 2013. • Mellor, G.J. “Clinical Characteristics and Circumstance of Death in the Sudden Arrhythmic Death Syndrome.” UK Heart Rhythm Congress, London, October 2013. • Sheikh, N. “Should we be developing ethnicity specific ECG guidelines in athletes?” EuroPRevent, Rome, April 2013. • Sheikh, N. “Athlete’s Heart: The Role of Echocardiography.” Hammersmith Echocardiography Conference, London, May 2013. • Sheikh, N. “Impact of ethnicity on cardiac remodelling in athletes.” BCS Annual Conference, London, July 2013. • Sheikh, N. “Athletes with ECG abnormalities: Beyond T-wave inversions.” CRY International Conference, London, October 2013. • Sheikh, N. “All Athletes Should be Screened with an ECG Before Sports Participation: The Pro Argument.” Debate against Professor William McKenna, 10th Meeting of the Myocardial and Pericardial Diseases Working Group of the European Society of Cardiology, Prague, October 2013. • Sheikh, N. “Sudden Death During Sports Activity: Epidemiology and Prevention.” Advances in Electrophysiology Heart Exhibition, Rome, November 2013. • Zaidi, A. “Echocardiographic assessment of the athlete’s heart.” CRY international Conference, London, October 2013.

Books • Narain, R., Gati, S., Sharma, S. “Cardiac Screening for Athletes”. In: Recent Advances in Cardiology Volume 16. JP Medical Ltd, 2014.

For a full list of research visit www.c-r-y.org.uk/cry_research.htm Cardiac Risk in the Young

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CRY’s Research History CRY’s Clinical Cardiology Research Programme - General Population CRY’s research team has taken the lead in the UK in identifying the prevalence of cardiac conditions in young people in the general population. Our findings are that screening young, apparently healthy, individuals will identify minor cardiac abnormalities in 1% of people and potentially serious disorders in 0.3% - i.e. about 1 in 300 young people. The false positive rate for CRY’s screening programme is just over 3% - lower than any comparable screening programme. One of the most important papers in recent years in determining true incidence of young sudden cardiac death is this article: Papadakis, M., Sharma, S., Cox, S., Sheppard, M.N., Panoulas, V.F. and Behr, E.R. “The magnitude of sudden cardiac death in the young: a death certificate-based review in England and Wales.” Europace 2009 Vol.11, No.10, p13531358. For the first time CRY does not have to say “Evidence suggests...” when talking about the scale of young sudden cardiac death. Now, when the incidence of young sudden deaths is discussed, it is informed by peer-reviewed evidence rather than ‘expert opinions’ or ‘anecdotal evidence’. It is known that these statistics are still conservative, but this paper has at least established an important baseline from which further research can be conducted. This research was initiated by the Loveday family and developed by CRY Research Fellows, Professor Sanjay Sharma, Professor Mary Sheppard and Dr Elijah Behr.

CRY’s Clinical Cardiology Research Programme - Elite Athletes CRY was the first organisation to identify the upper limits of wall thickness and cavity size in British athletes. CRY is the first organisation in the world to characterise cardiac dimensions in adolescent athletes – knowing how to differentiate pathology (disease) from physiology (normal because of exercise) is vital for diagnosis – and the first organisation to characterise ECG changes in athletes, in a document that is now the blueprint for the European Society of Sport Cardiology. Apart from diagnostics and these physiological goals, CRY has also been pivotal in identifying the prevalence of conditions such as hypertrophic cardiomyopathy (HCM) in athletes. This includes recently identifying conditions such as long QT syndrome as more common than HCM. CRY is also the first organisation to look at cardiac adaptation for athletes of African and Afro-Caribbean origin, as they differ from Caucasian athletes in the way they adapt to exercise. CRY’s findings are published in reputable, peer-reviewed journals and CRY’s guidelines are now nationally and internationally recognised.

Funding Professor Sharma oversees the CRY screening programme in which the CRY Research Fellows play a central role. Every person that CRY tests within the programme is asked to consent to having their data used anonymously for research purposes. This has developed a symbiotic relationship between research and screening where we are able to identify young individuals at risk, whilst learning from our experience and publishing these findings. When a donation is made to CRY, part of that donation will support CRY’s research programme. Families supporting CRY after a bereavement are given the option to specifically support research. The first donation to support research was £10,000 donated in memory of Levon Morland in 2005. Further support includes £100,000 donated in memory of Robert Lancaster to fund Dr Hari Raju’s Research Fellowship with Dr Elijah Behr. Each year, the fund in Northern Ireland donates £20,000 towards the research programme. The families of Joe Kellogg, Jason Nixon and Rebecca Phillips have requested that all donations in their memory should go directly to research. As in previous years, sponsorship and donations raised from the annual CRY Heart of London Bridges Walk have gone towards funding CRY’s Research Fellowship programme. 8

Research Highlights 2013

Cardiac Risk in the Young

Research newsletter 2013  

Cardiac Risk in the Young's research highlights from 2013.

Research newsletter 2013  

Cardiac Risk in the Young's research highlights from 2013.

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