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Research Highlights 2014 Inside this issue. . . P2 P3 P4 P4

Research Awards CRY International Conference EuroPRevent Conference British Cardiovascular Society Conference P5 Interview with Dr Sheikh P6 Research P8 CRY’s Research Programme

Offering help and support to affected families @CRY_UK CardiacRiskintheYoung www.c-r-y.org.uk


The Pete Hinchliffe Travel Award for Medics

Research Awards

The 2013 Pete Hinchliffe Award was won by Dr Sabiha Gati in recognition of her being the most outstanding CRY Research Fellow that year.

The award provides a grant of £1,000 to allow Dr Gati to travel to international conferences to showcase her research findings and learn from her counterparts in the global cardiology community. The award was created by the family of Pete Hinchliffe, who died suddenly in 2010 whilst out cycling, aged 33, 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.

pregnant women. Pregnancy, like chronic exercise, is associated with a dramatic increase in the volume of blood in the heart. Dr Gati tested whether the women would develop trabeculations as their pregnancy developed, and then tested whether the trabeculations would disappear after the birth of their child. She found that more than a quarter of the women developed trabeculations during pregnancy, and like her elite athletes, almost 10% fulfilled the criteria for LVNC. Over the next two years, almost all the women’s hearts completely returned to normal – suggesting that increased trabeculations in athletes and low risk individuals in the population are likely a harmless response to increased cardiac preload.

Dr Gati was introduced as winner of the award at the CRY Conference 2014 and went on to present her research. On receiving the award, she said: “It feels fantastic to have won the Pete Hinchliffe Award. With CRY’s support I was able to perform the research on hypertrabeculation in athletes and the preload hypothesis.”

As a result of her research, Dr Gati concluded that current criteria for LVNC are both not sufficiently validated and not specific enough – more expansive studies are essential to better understand the significance of hypertrabeculation and verify the cardiac markers which should establish a diagnosis of LVNC.

Her research concerned left ventricular non-compaction (LVNC), a dangerous condition associated with several other cardiovascular diseases and heart failure. LVNC is characterised by signs including “hypertrabeculation”; a spongy mesh of muscle bands, or “trabeculations”, lining the ventricle walls.

Dr Gati said: “I’d like to thank CRY for all the support they’ve given me to make this research possible, Professor Sharma for being the best supervisor I’ve ever come across, and I’d also like to thank the pregnant women who took part in this study.”

Dr Gati’s initial research showed hypertrabeculation is much more common in elite athletes; in her study almost 10% fulfilled the criteria for LVNC – too many to be a sign they all suffered from a dangerous cardiac disease. She then looked at whether athletes’ increased trabeculations could be due to higher cardiac “preload” (related to a high volume of blood in the heart) brought on by chronic exercise, and whether trabeculations would disappear over time if the heart’s workload decreased. The theory was tested by conducting a study with 102

Other CRY Research Fellow Awards in 2014 Dr Sabiha Gati was awarded a prize at the EuroPRevent Conference 2014 for her poster “Reversible left ventricular trabeculation associated with increased cardiac preload in a pregnancy model: where do we stand with adult left ventricular non-compaction in low risk populations?”

Dr Aneil Malhotra was awarded a prize at the EuroPRevent Conference 2014 for his poster “Prevalence and significance of anterior T wave inversion in females.”

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CRY International Medical Conference The ninth annual CRY Conference took place at the Cavendish Centre in London on 10th October 2014. The day featured research presentations by internationally renowned cardiology professors from France, Sweden, Belgium, Italy, Britain and the USA. There were further contributions from 11 current and former CRY Research Fellows, including myheart Network Cardiologist Dr Michael Papadakis, as well as Dr Andrew Cox from the British Army.

Conferences

“Preventing sudden cardiac death in the young” featured seven presentations on the development of cardiac screening programmes, athletic and otherwise, within various countries and organisations. Professor Domenico Corrado described the progress of the Italian ECG athletic screening programme, which has been shown to have reduced sudden cardiac death in athletes by around 90%. Professor Christine Lawless then offered a contrasting insight into American athletic cardiac screening. The American Heart Association is reluctant to recommend pre-participation Presentations ECG screening in sport, however, strong European research such as that of Professor Corrado does influence views across the Atlantic. Professor Cardiovascular adaption to exercise Lawless stressed that the USA has a vast population and cardiac screening varies greatly from youth to professional sports as well between the state “QT-interval in young athletic individuals; The long and jurisdictions young Americans compete in. short of it” Professor François Carré Dr Andrew Cox of the British Army gave a comprehensive appraisal of a new cardiac screening programme for UK military recruits, “very similar” to the CRY programme, which has cut referral and investigative costs while improving effectiveness by conducting ECGs during general medical testing. CRY Fellow Dr Rajay Narain presented statistics from CRY’s 2012 screening of 12,000 people aged between 14 and 35. The updated CRY statistics continue to lend weight to arguments for the standardised national screening of young people in the UK: of those eventually diagnosed, a survey showed 60% had their conditions precisely identified at their initial CRY screening. Professor Hein Heidbüchel, Professor Corrado, Professor Lawless, Dr Aneil Malhotra, Dr Narain and Dr Steve Cox – CRY’s Deputy CEO and Director of Research and Screening – took part in a 30 minute panel discussion to tackle issues raised by the audience. These included the best way to direct patients to specialists if symptoms present; the consequences of misdiagnosis; and improving the education of frontline health professionals, including the potential for additional guidelines and certification for screening personnel. Professor Sanjay Sharma, CRY Consultant Cardiologist, opened his presentation on the treatment of athletic cardiac arrest with an account of a harrowing personal experience in his role as Medical Director for the London Marathon; the sudden cardiac death of a young female runner in 2012. He argued that a reason athletic cardiac deaths are so emotional is that the majority could have been prevented. In the final session, case studies were presented by new CRY Research Fellows; Dr Lynne Millar, Dr Keerthi Prakash, Dr Vincent Gabus and Dr Harshil Dhutia, who raised difficult questions and prompted fierce debate amongst the audience and chairpersons; Professor Sharma, Professor Lawless and Dr Steve Cox. For some of the speakers it was their first chance to present CRY research and demonstrate growing expertise in the face of clinical dilemmas. CRY received very good averaged feedback from attendees on the day. Presentation footage will soon be available on CRY’s website.

For more about the CRY Conference visit www.c-r-y.org.uk/cry-international-conference Cardiac Risk in the Young

“Right ventricular enlargement in athletes; Physiology vs pathology” Dr Abbas Zaidi “Early repolarisation; Training related or marker of heart disease?” Dr Greg Mellor “The veteran athlete’s heart; Unravelling the mystery of chronic intense exercise”Dr Ahmed Merghani Preventing sudden cardiac death in the young “Update of pre-participation screening in athletes; ten years onwards” Professor Domenico Corrado “Current state of pre-participation screening in the USA; Facts and fallacy” Professor Christine Lawless “Screening elite football players; The FA experience” Dr Aneil Malhotra “Screening of military recruits; The British Army experience” Dr Andrew Cox “The CRY experience; A pragmatic approach to screening” Dr Rajay Narain “The registry on ICD in athletes; Same dataset but different perspectives” Professor Hein Heidbüchel “Treating cardiac arrest in the athletic field; The moment everyone dreads” Professor Sanjay Sharma Athletes with cardiovascular disease “Update of exercise recommendations for athletes with IHD” Professor Mats Borjesson “The role of exercise testing in the assessment of athletes; Beyond IHD” Dr Michael Papadakis “Athletes with HCM; Black and white, or fifty shades of grey?” Dr Nabeel Sheikh The Pete Hinchliffe Award “Paradigms of hypertrabeculation of the LV myocardium; Novel cardiomyopathy or physiological response to increased cardiac load?” Dr Sabiha Gati Research Highlights 2014

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Conferences

EuroPRevent Conference The European Association for Cardiovascular Prevention and Rehabilitation (EACPR) held their EuroPRevent Conference in Amsterdam from May 8th-10th. Dr Michael Papadakis, CRY myheart Network Cardiologist and former Research Fellow, reported on the significant recognition of the CRY Research Group at the conference in 2014:

“I am just back from EuroPRevent 2014. Professor Sharma is now officially the head of sports cardiology in Europe as he commenced his duties as chair of our section. The conference was definitely a triumph for our group. Professor Sharma, myself and the Fellows delivered in total nine superb talks and presented eight posters, with Dr Aneil Malhotra and Dr Sabiha Gati winning a poster prize each. The names of Sanjay Sharma, CRY and St George’s Hospital were everywhere and it was clear to everyone that our group is the top sports cardiology group in Europe with amazing data, not only on sports cardiology, but also on preventing sudden cardiac death in the young, cardiomyopathies and screening. CRY’s name was also mentioned on multiple occasions in the board meetings as a result of the educational material we have produced during the annual CRY International Medical Conference: 16 of the 17 chapters available in the sports cardiology section of the European Society of Cardiology (ESC) eLearning platform feature CRY. These will form the basis for the education of physicians from Europe and beyond. This will be a great advertisement for CRY around Europe over the next few years as the platform becomes more populated and is used by the individual national cardiology societies.” Significantly, CRY Fellow Dr Rajay Narain gave a presentation using statistics from CRY’s screening of over 12,000 young people in 2012 as convincing evidence of the feasibility and cost-effectiveness of a national screening programme. An article reporting on Dr Narain’s presentation was the leading story on the ESC website on the morning of May 8th.

British Cardiovascular Society Conference The UK’s biggest cardiology conference opened at the Manchester Central Centre on Monday 2nd June, closing on Wednesday 4th. CRY Consultant Cardiologist Professor Sanjay Sharma and five current and former CRY Research Fellows attended to present developments in their research. Professor Sharma gave another extremely popular “Hot Topics” talk on differentiating between healthy changes in the heart due to exercise and pathological condition hypertrophic cardiomyopathy (HCM). He also offered his expertise as Medical Director of the London Marathon in a live interview to discuss the health benefits and potential dangers of marathon running and other extreme exercise. A Wednesday presentation session comprised Professor Sanjay Sharma, former CRY Fellows Dr Nabeel Sheikh and Dr Abbas Zaidi as well as expert Dr John Buckley, who previously demonstrated exercise testing with CRY Patron Andrew Triggs-Hodge MBE at 2013’s conference. Dr Sheikh and Dr Zaidi both used their talks to discuss “athlete’s heart”, with presentations on ECG diagnostic criteria and the left and right ventricles. Professor Sharma’s presentation addressed the incidence of sudden cardiac death in athletes. Research Fellow Dr Aneil Malhotra and former Fellows Dr Sabiha Gati and Dr Saqib Ghani were also at the conference to discuss developments in their research, with Dr Malhotra and Dr Gati both exhibiting posters at the event.

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Dr Nabeel Sheikh Edited excerpts from an interview with Dr Nabeel Sheikh, who was a CRY Research Fellow from 2011 to 2013, and had the paper “Comparison of ECG Criteria for the Detection of Cardiac Abnormalities in Elite Black and White Athletes” published in Circulation on 22nd April 2014. “Sudden cardiac death (SCD) is the leading cause of nontraumatic mortality in young athletes. The vast majority of cases are due to cardiac conditions which can be detected by screening. Intense debate exists as to the best way to perform screening. One of the reservations about ECG screening is false-positive results, which occur because the changes on ECG that can develop as a result of exercise may sometimes overlap with the changes that occur in conditions responsible for SCD in athletes. The ESC produced guidelines in 2005 to help doctors tell the difference between normal and abnormal ECG patterns. Although updated in 2010, these guidelines have remained associated with high false-positive rates. Furthermore, the ESC recommendations are derived from data on Caucasian (white) athletes and fail to account for changes which athletes of other ethnicities get, in particular athletes of African/Afro-Caribbean ethnicity (black athletes). Data now clearly shows that black athletes exhibit significantly more ECG changes in response to exercise than white athletes, and that some of these changes may be normal. Although publication of the “Seattle Criteria” in 2013 attempted to further help doctors and accounted for some of the changes black athletes may develop, these were not all based on research evidence and in our opinion did not go far enough.

Interview 103 young, asymptomatic athletes who had already been diagnosed with hypertrophic cardiomyopathy (HCM) to see how many athletes with HCM would be correctly identified by each ECG criteria. The results showed that the ESC recommendations caused a staggering 40.4% of black athletes to test positive with an abnormal ECG. Importantly, however, 16.2% of white athletes also tested positive on the basis of the ESC recommendations. The Seattle criteria reduced the number of positive ECGs to 18.4% in black athletes and 7.1% in white athletes. However, the refined criteria further reduced abnormal ECGs to 11.5% in black athletes and just 5.3% in white athletes. Significantly, all three criteria identified 98.1% of athletes with HCM. Overall, the study identified 40 athletes with a cardiac condition. Of these individuals, 25 were diagnosed with only minor problems. The remaining 15 were diagnosed with serious pathology, which was defined as a condition that has been recognised as a cause of exercise-related SCD in young athletes. All 15 cases of serious pathology were identified by a combination of history and 12-lead ECG, with the majority (93.3%) identified on the basis of ECG. This crucial work has furthered our understanding of normal versus abnormal ECG patterns in athletes, showing that based on CRY’s novel research, refinement of current ECG screening criteria can have a significant impact in reducing the burden of false positive results. Importantly, this occurs without reducing the ECG’s sensitivity for detecting serious cardiac conditions. Indeed, the ECG correctly identified 93.3% of serious cardiac pathology which may otherwise have gone undetected.”

Our own experience of screening elite athletes through CRY led us to re-evaluate our practice of ECG interpretation in athletes from 2010 onwards. We came up with a set of “refined” ECG screening criteria. We assessed the impact of our refined criteria on the false-positive ECG rate in a large number of black (n=1,208) and white (n=4,297) athletes undergoing pre-participation screening with CRY between 2000 and 2012. The ECGs of all these athletes were re-evaluated using our new refined criteria, the current ESC recommendations, and the recent Seattle Criteria, to see how many positive ECG results would be produced by each that required athletes to undergo further investigations. All three ECG criteria were also applied to the ECGs of

Read the full interview at www.c-r-y.org.uk/interview-with-dr-nabeel-sheikh-2 Cardiac Risk in the Young

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Papers

Research

• Beattie, R., Booth, K., Herron, B., Sheppard, M.N., Parissis, H. “Constrictive pericarditis and rheumatoid nodules with severe aortic incompetence.” Case Reports in Medicine. February 2014. • Chandra, N., Bastiaenen, R., Papadakis, M., Panoulas, VF., Ghani, S., Duschl, J., Foldes, D., Raju, H., Osborne, R., Sharma, S. “Prevalence of electrocardiographic anomalies in young individuals: relevance to a nationwide cardiac screening program.” Journal of the American College of Cardiology. February 2014. • Dhutia, H. “A differential diagnosis for left atrial mass on transthoracic echocardiography: hiatus hernia.” Case Reports in Gastroenterology. March 2014. • Sheikh, N., Papadakis, M., Ghani, S., Zaidi, A., Gati, S., Adami, P.E., Carré, F., Schnell, F., Wilson, M., Avila, P., McKenna, W., Sharma, S. “Comparison of electrocardiographic criteria for the detection of cardiac abnormalities in elite black and white athletes.” Circulation. April 2014. • Sheikh, N., Sharma, S. “Impact of ethnicity on cardiac adaptation to exercise.” Nature Reviews Cardiology. April 2014. • D’Silva, A., Sharma, S. “Exercise, the athlete’s heart, and sudden cardiac death.” The Physician and Sportsmedicine. May 2014. • Patel, J., Patel, S., Sheppard, M.N. “Benign cardiac tumours associated with sudden death.” Europace. June 2014. • Gati, S., Papadakis, M., Papamichael, N.D., Zaidi, A., Sheikh, N., Reed, M., Sharma, R., Thilaganathan, B., Sharma, S. “Reversible de novo left ventricular trabeculations in pregnant women: Implications for the diagnosis of left ventricular non-compaction in low risk populations.” Circulation. August 2014. • Hill, S.F., Sheppard, M.N. “A silent cause of sudden cardiac death especially in sport: congenital coronary artery anomalies.” British Journal of Sports Medicine. August 2014. • Jivanji, S.G., Daubeney, P., Franklin, R., Sheppard, M. “Right ventricular cavity near obliteration in neonatal severe biventricular hypertrophic cardiomyopathy.” BMJ Case Reports. October 2014. • Krexi, D., Sheppard, M.N. “Pulmonary hypertensive vascular changes in lungs of patients with sudden unexpected death. Emphasis on congenital heart disease, Eisenmenger syndrome, postoperative deaths and death during pregnancy and postpartum.” Journal of Clinical Pathology. October 2014. • Wong, L.C., Roses-Noguer, F., Till, J.A., Behr, E.R. “Cardiac evaluation of pediatric relatives in sudden arrhythmic death syndrome: a 2-center experience.” Circulation: Arrhythmia and Electrophysiology. October 2014. • Sharma, S., Merghani, A., Gati, S. “Cardiac Screening of Young Athletes Prior to Participation in Sports: Difficulties in Detecting the Fatally Flawed Among the Fabulously Fit.” JAMA Internal Medicine. November 2014. • Caruana, M., Sheppard, M.N., Li, W. “Aneurysmal dilatation of the aortic sinuses of Valsalva – beyond Marfan syndrome: a single centre experience and review of the literature.” Frontiers of Medicine. December 2014. • Mellor, G., Raju, H., de Noronha, S.V., Papadakis, M., Sharma, S., Behr, E.R., Sheppard, M.N. “Clinical Characteristics and Circumstances of Death in the Sudden Arrhythmic Death Syndrome.” Circulation: Arrhythmia and Electrophysiology. December 2014. • Riding, N.R., Sheikh, N., Adamuz, C., Watt, V., Farooq, A., Whyte, G.P., George, K.P., Drezner J.A., Sharma, S., Wilson, M.A. “Comparison of three current sets of electrocardiographic interpretation criteria for use in screening athletes.” Heart. December 2014. • Wong, L.C., Behr, E.R. “Sudden unexplained death in infants and children: the role of undiagnosed inherited cardiac conditions.” Europace. December 2014.

Presentations • Dhutia, H., Parpia, S., Narain, R., Ghani, S., Chandra, N., Malhotra, A., Millar, L., Merghani, A., Papadakis, M., Sharma, S. “The impact of current ECG criteria in cardiac screening of young individuals; Relevance to short-QT syndrome.” EuroPRevent Conference, Amsterdam, May 2014. • Dores, H., Malhotra, A., Sheikh, N., Millar, L., Dhutia, H., Narain, R., Merghani, A., Papadakis, M., Sharma, S. “Abnormal electrocardiographic findings in athletes: correlation with sport type and intensity of training.” EuroPRevent Conference, Amsterdam, May 2014. • Narain, R., Dhutia, H., Merghani, A., Myers, J., Malhotra, A., Millar, L., Sheikh, N., Sharma, S., Papadakis, M. “Preventing sudden cardiac death in the young: Results from a population-based screening programme in the UK.” EuroPRevent Conference, Amsterdam, May 2014. • Papadakis, M. “Sudden cardiac death in young competitive athletes: The beginning, not the end!” EuroPRevent Conference, Amsterdam, May 2014. • Sheikh, N. “How to assess a young athlete with echocardiography.” EuroPRevent Conference, Amsterdam May 2014.

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Presentations

Research

• Sheikh, N., Papadakis, M., Malhotra, A., Millar, L., Dhutia, H., Merghani, A., Narain, R., Dores, H., Sharma, S. “The electrocardiographic phenotype in athletes with hypertrophic cardiomyopathy: implications for pre-participation cardiovascular evaluation using electrocardiography.” EuroPRevent Conference, Amsterdam, May 2014. • Sheikh, N. “The athlete’s heart... Back to the future (Seattle criteria).” British Cardiovascular Society Conference, Manchester, June 2014. • Zaidi, A. “The athlete’s heart... Is big always beautiful? (Big LV and big RV...)” British Cardiovascular Society Conference, Manchester, June 2014. • Narain, R. “Preventing Sudden Cardaic Death in Young Indians.” Heart Fest, Patna Medical College, India July 2014. • Gati, S. “Paradigms of hypertrabeculation of the LV myocardium; Novel cardiomyopathy or physiological response to increased cardiac load?” CRY International Medical Conference, London, October 2014. • Malhotra, A. “Screening elite football players; The FA experience.” CRY International Medical Conference, London, October 2014. • Mellor, G. “Early repolarisation; Training related or marker of heart disease?” CRY International Medical Conference, London, October 2014. • Merghani, A. “The veteran athlete’s heart; Unravelling the mystery of chronic intense exercise.” CRY International Medical Conference, London, October 2014. • Narain, R. “The CRY experience; A pragmatic approach to screening.” CRY International Medical Conference, London, October 2014. • Papadakis, M. “The role of exercise testing in the assessment of athletes; Beyond IHD.” CRY International Medical Conference, London, October 2014. • Sheikh, N. “Athletes with HCM; Black and white, or fifty shades of grey?” CRY International Medical Conference, London, October 2014. • Zaidi, A. “Right ventricular enlargement in athletes; Physiology vs pathology.” CRY International Medical Conference, London, October 2014. • Narain, R., Mellor, G., Dhutia, H., Merghani, A., Kumar, N., Millar, L., Malhotra, A., Papadakis, M., Sharma, S. “The prevalence of early repolarisation pattern in young Indian population.” Cardiology Society of India, Hyderabad, December 2014.

Posters • Dores, H., Malhotra, A., Sheikh, N., Dhutia, H., Millar, L., Merghani, A., Narain, R., Papadakis, M., Sharma, S. “Prevalence and clinical significance of inferior T-wave inversions in competitive athletes.” EuroPRevent Conference, Amsterdam, May 2014. • Gati, S., Papadakis, M., Zaidi, A., Papamichael, N., Sheikh, N., Reed, M., Sharma, R., Thilaganathan, B., Sharma, S. “Reversible left ventricular trabeculation associated with increased cardiac preload in a pregnancy model: where do we stand with adult left ventricular non-compaction in low risk populations?” EuroPRevent Conference, Amsterdam, May 2014. • Malhotra, A., Dhutia, H., Gati, S., Dores, H., Sheikh, N., Millar, L., Narain, R., Merghani, A., Papadakis, M., Sharma, S. “Prevalence and significance of anterior T wave inversion in females.” EuroPRevent Conference, Amsterdam, May 2014. • Merghani, A., Walker, M., Narain, R., Cox, A., Millar, L., Dhutia, H., Malhotra, A., Sheikh, N., Papadakis, M., Sharma, S. “Cardiovascular disease and symptoms in veteran endurance athletes: a purely ageing phenomenon?” EuroPRevent Conference, Amsterdam, May 2014. • Merghani, A., Walker, M., Narain, R., Mellor, G., Millar, L., Dhutia, H., Malhotra, A., Sheikh, N., Papadakis, M., Sharma, S. “What predicts atrial fibrillation in veteran endurance athletes?” EuroPRevent Conference, Amsterdam, May 2014. • Narain, R., Mellor, G., Dhutia, H., Merghani, A., Kumar, N., Millar, L., Malhotra, A., Papadakis, M., Sharma, S. “The prevalence of early repolarisation pattern in young Indian population.” EuroPRevent Conference, Amsterdam, May 2014. • Narain, R., Dhutia, H., Malhotra, A., Merghani, A., Millar, L., Kumar, N., Sheikh, N., Dores, H., Papadakis, M., Sharma, S. “Screening for cardiovascular risk factors a must in the young; experience from urban India.” Acute Cardiovascular Care Congress, Geneva, October 2014. • Malhotra, A., Sheikh, N., Dhutia, H., Siva, A., Narain, R., Merghani, A., Millar, L., Walker, M., Sharma S., Papadakis, M. “Differentiation of hypertrophic cardiomyopathy from physiological left ventricular hypertrophy in athletes: An assessment of echocardiographic recommendations.” EuroEcho-Imaging Conference, Vienna, December 2014.

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

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Professor Sanjay Sharma, CRY Consultant Cardiologist The CRY 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 up to two years who choose to specialise in the fields of inherited cardiac diseases, sudden cardiac death, screening and sports cardiology. As of January 2015 there are nine CRY Research Fellows and three visiting Honorary Fellows at St George’s Hospital who divide their time between NHS clinics, CRY screenings and research. As well as the Fellows CRY are currently funding, 14 former Fellows have been trained as specialists by CRY and are now working in the NHS throughout the UK. Professor Sharma oversees the CRY National 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.

CRY’s Research Programme CRY’s research is focussed on cardiac pathology and screening in both the general population and elite athletes. 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 be able to interpret the results of every young person. 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 have been evaluated, resulting in many “firsts” in the scientific literature. CRY’s Research Group 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 around 1% of people and potentially serious disorders in around 0.3% – one 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 determining the true incidence of young sudden cardiac death is: 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, p1353-1358. For the first time CRY does not have to say “Evidence suggests...” when talking about the scale of young sudden cardiac death (YSCD). Now, when the incidence of young sudden deaths is discussed, it is informed by peer-reviewed evidence. CRY’s future research aims include increasing our knowledge of the prevalence and characteristics of inherited heart disorders which can cause YSCD; enhancing the accuracy of diagnostic tools for identifying these conditions; and improving the feasibility of cardiac screening programmes’ availability on the NHS for young people nationwide.

Funding When a donation is made to CRY, part of that donation will support the CRY Research Programme. Families supporting CRY after a bereavement are given the option to specifically support research. Previous donations to research have been made in memory of Emma Broad, Adam Donnelly, Sebastian English, Robert Lancaster, Levon Morland, Sarah Simpson and Hannah Turberville. In 2014, nearly £2,000 was donated to research in memory of Rebecca Phillips, £2,000 in memory of Josh Fell, over £5,000 in memory of James Haggerty, over £15,000 in memory of Joe Kellogg, and £120,000 in memory of Robert Lancaster in respect of McColl’s Halloween campaign. A further £20,000 was donated to support screening and research in Northern Ireland. Nearly £700,000 has been donated in support of the CRY Research Programme since 2005. The families of Joe Kellogg, Robert Lancaster, Jason Nixon and Rebecca Phillips have requested that all future donations in their memory should go towards research. As in previous years, sponsorship and donations raised from the annual CRY Heart of London Bridges Walk will go towards CRY’s research.

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Profile for Cardiac Risk in the Young

Research newsletter 2014  

Research newsletter 2014