Dr Steven Cox Chief Executive @drstevenjcox Overview Achievements - - PowerPoint PPT Presentation

20 years of preventing young sudden cardiac deaths through awareness, screening and research and supporting affected families

Dr Steven Cox Chief Executive @drstevenjcox

Overview

Achievements Finance Ringfenced Funds Developments in 2016 Representatives

Achievements Finance Ringfenced Funds Developments in 2016 Representatives

• screened well over 80,000 young people (soon will pass 100,000)
• funded 14 (+7 being trained) research fellowship grants
• published over 100 articles, book chapters & academic papers
• established the
• CRY Centre for inherited Cardiovascular Conditions & Sports Cardiology
• CRY Centre for Cardiac Pathology
• held 10 annual International Medical Conferences on Sports Cardiology & YSCD
• attracted over 100 MPs to the Cardiac Risk in the Young APPG
• successfully informed government policy leading to new NHS guidelines for

referrals after a young sudden cardiac death

Achievements

Since 1995 CRY has;

Achievements Finance Ringfenced Funds Developments in 2016 Representatives

How CRY spends donations

Over 80p in every pound goes towards CRY’s aims

awareness, support, screening & research

% of donations going to CRY's aims

Goes to CRY's aims Fundraising & governance

2007 2008 2009 2010 2011 2012 2013 2014 2015 Total raised online (inc. ga) £359,735 £369,910 £538,059 £619,797 £701,985 £1,006,496 £1,090,521 £1,164,099 £1,436,755 Total number of donations 8,067 9,803 14,755 16,280 19,756 28,351 33,082 35,786 40,093 Average donation amount £44.59 £37.73 £36.47 £38.07 £35.53 £35.50 £32.96 £32.53 £31.08 Total pages created 261 393 546 827 1,002 1,152 1,202 1,447 1,620

Online Donations

Pages Created

• No. of

Donations Raised Average Donation Gift Aid Average Donation inc Gift Aid Just Giving 776 17,855 £500,601 £28.04 £103,532 £33.84 Virgin Money Giving 838 22,092 £703,971 £31.87 £122,802 £37.42 BT MyDonate 6 146 £4,867 £33.34 £981.50 £40.06 Total 1,620 40,093 £1,209,439 £31.08 £227,315 £37.11

Online donations

Up by 23% Virgin money giving is the best way to donate to CRY

Achievements Finance Ringfenced Funds Developments in 2016 Representatives

£3,500 charge to test 100 people covers the cost of

• field staff (salaries, food, hotel and travel)
• the office based screening co-ordinators and management

It does not cover the cost of the

• research fellow (dr on the day), their training / clinical supervision
• insurance
• machinery depreciation

Machinery (van, ECG ECHO machines) is covered by grants from ringfenced funds and trusts who donate cardiac machinery to CRY January 1st 2017 - increase private screenings to £50 per person

• increase screening income by £100,000 / year

Cost of CRY screening

Screening is currently subsidised by Professor Sharma and CRY Screening is what makes CRY unique, it is what we do

CRY families who take forward screening

• Raise awareness of CRY – keep our message out there – media / facebook
• Provide a service to 10s of 1000 of young people every year
• Engage 1,000s of people in CRY
• Support CRY core funding through “gift aid” on donations

If or when we do put up the cost we think the best way would be to give 1-2 years notice and confirm any events booked before a specified date would be at £35.There would be no time limit for how far ahead they could book. New funds would first have to raise £3,500 then be charged at £50 per person Keep St George’s regular clinic at £35

Ringfenced Funds

484 memorial funds – 212 ringfenced

If or when to put up the cost of ringfenced fund screenings for CRY families, what is the right way to do this?

First to identify ringfenced funds which are not active! “Please note that CRY reserves the right to use ringfenced funds to support the CRY screening programme when a screening event is not organised within four years of setting up the ringfenced fund.” In south east - take over funding “St George’s screenings” (20+ screenings per year at £35 per person) In sport - EIS screenings – 10-20k per annum Support CRY referral centre (Dr Michael Papadakis / Physiologist / Administrator)

Ringfenced Funds

484 memorial funds – 212 ringfenced

If or when to put up the cost of ringfenced fund screenings for CRY families, what is the right way to do this?

Achievements Finance Ringfenced Funds Developments in 2016 Representatives

Currently fund Professor Sharma’s team at St George’s (£500k per year)

• Nurse, physiologist and 8 fellowship grants.

Increase grant to Prof Sharma to £650,000 (£682,500 including University overheads) support the expansion of screening and ICC clinics

• Include a CRY Cardiologist (70k)
• Supervision of research fellows / papers
• Master’s training course (October) / CRY conference / EACPR / Ethics
• Support for Prof Sharma – as we grow he needs support
• Administrator (30k)
• Support nurse who current does admin work/booking appointments
• Additional physiologist (50k)
• 5% contribution to grants to cover University overheads

CRY Centre for Inherited Cardiovascular Conditions & Sports Cardiology

Expanding this unique service in 2016

Achievements Finance Ringfenced Funds Developments in 2016 Representatives

• Update – always 3-6 months out of date!
• Enewsletter
• Click through to upcoming events
• Twitter (what is happening now)
• Facebook (media clips or short videos e.g. John Inverdale)
• Instagram (short awareness videos)
• Screening interest form http://c-r-y.us9.list-

manage.com/subscribe?u=bb9eea4e8db4652e04e295506&id=0076 55e445 If you are wanting to promote screening events in your area you will be told when events go up online

Keeping updated with CRY

Day to day communications with supporters

• Changes to home page on website
• Changes to representatives page on website
• Not designed to replace enewsletters or social media

In the next few weeks we will be sending a few emails to you

• 1. PR – opt in to being directly contacted by Trinity
• 2. Social media – asking Twitter handle, facebook URL, instagram.

If not sure about anything ask Ruth Lowe

Keeping updated with CRY

Regular emails to representatives

Updating the website page

• Key messages
• Videos (Beaten)
• Links to videos (for social media/emails…)
• “Standard” CRY tweets
• Media pack
• New presentation
• Postcard images

Representatives

www.c-r-y.org.uk/representatives

Awareness

. The number of apparently fit and healthy young people believed to be dying every week in the UK of undiagnosed heart conditions 1995 Only 1 a week Anecdotal evidence 2000 4 to 8 a week Anecdotal evidence 2004 At least 8 every week Anecdotal evidence 2008 At least 12 every week published data (ONS*) 2004 Private members bill 2004 8 a week postcard 2005 NSF chapter 8 2008 12 a week postcard

Awareness

• f young sudden cardiac death

Awareness

Preventing young sudden cardiac death

Family history of Young Sudden Death Symptoms that put you at risk chest pain (exercise related) passing out (syncope) breathlessness palpitations dizziness Those at risk with NO Symptoms www.testmyheart.org

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For more information on CRY’s manifesto go to www.c-r-y.org.uk/manifesto

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A national strategy for the prevention of Young sudden Cardiac Death is needed to synchronise UK policies and lead to a dramatic reduction in deaths in the UK The strategy will ensure action to increase:

• Awareness amongst medical practitioners and those at risk
• Support after a young sudden death, including expert cardiac pathology
• Screening for young people to identify cardiac conditions
• Research to inform policy and practice

Awareness

CRY Manifesto

Awareness

Postcard Campaign

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Put on hold due to significant changes in parliament / government

Awareness

Open day September event cancelled

Expensive High risk if low attendance Needs to be linked with a major event More informal In 2016 we will be focusing on the Bridges Walk More staff attending Major event of the year to bring families together New venue – potentially 4000 people

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Awareness

www.yscd.org.uk 540 families have so far supported the campaign

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For more information on CRY’s response to the National Screening Committee recommendation NOT to scree go to www.yscd.org.uk DoH and NICE say the ECG is an important test and there are management pathways for people at risk. NSF chapter 8 – after a young sudden cardiac death families should be referred to heart rhythm specialists NICE T Loc (transient Loss of Consciousness) guideline – young people with syncope (passing out) referred for ECG NHS choices – ECG is the first test when cardiac conditions are suspected (WPW, Long qt, Brugada, Cardiomyopathy…) The National Screening Committee disagrees and says there is no evidence of the accuracy of the ECG

P26

UK policy is inconsistent

NICE / Department Health disagree with the National Screening Committee (NSC)

Awareness

Key messages During radio / TV interviews these are our key messages

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Every week in the UK, 12 apparently fit and healthy young people, age 35 and under, die from undiagnosed cardiac conditions 80% of young sudden cardiac deaths will occur with no prior symptoms One in every 300 of the young people that CRY tests will be identified with a potentially life threatening condition Screening can lead to an 89% reduction in YSCD Although screening will not identify all young people at risk, in Italy, where screening is mandatory for all young people engaged in organised sport, they have reduced the incidence of young sudden cardiac death by 89%

Representatives and PR

How best to work with the media

P28

Increasing number of media want to research stories before agreeing to a story, often talking with a family Footage is taken and then not used Interviews cancelled at the last moment Circulate an email to all representatives

• Direct contact by Jo
• Radio / TV / Print
• Key messages

/CardiacRiskintheYoung @CRY_UK /cryvideos

www.c-r-y.org.uk/20years

Every £1 = facebook advertising = >1,000 views Every 4.4p = 1 engagement (like, share, comment or like post)

Social Media

throughout 2016

Awareness

BBC Lifeline Appeal Sunday 21st February BBC 1 Wednesday 24th February BBC 2

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CRY Patron Pixie Lott Julie and Sian Donnelly James Bailey

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Awareness

BBC Lifeline Appeal Sunday 21st February BBC 1 Wednesday 24th February BBC 2

Screening & Research

Screening

Giving young people the choice to be tested 1993 LTA first sports screening in UK 1995 CRY founded 1997 First school screening (Worksop) 2007 ECG (echo) screening 2007 CRY Philips Screening of GB Olympic Athletes leading to 2012 2010 RFU - Premiership Rugby 2010 ICAP grant (£240,000) screening clinic at St George’s 2015 RFL – Top 3 tiers of Rugby League CRY has gone from testing 100s of people each year to testing 10s of thousands each year.

5000 10000 15000 20000 25000 YR 2014 YR 2015 Private Event (Others) Private Event (Schools) Sports St George's Hospital Northern Ireland Family Funded

Screening

Giving young people the choice to be tested 80% of young sudden cardiac deaths have no symptoms 80% of SADS deaths occur at home or during rest

75% will book free online in 3 clicks Any person aged between 14 and 35

www.testmyheart.org #testmyheart

In 2015 CRY tested

23,000

young people

CRY Families have funded over £2,500,000 to offer screening CRY Families have funded over £2,000,000 to fund research

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20 years of …..

Screening and Research 21 CRY Research fellows Broaden expertise in young sudden cardiac death to other UK hospitals Creating an infrastructure of specialists throughout the UK In 2005 CRY funded our first research fellow grant with Dr Sanjay Sharma

Papers published in 2015

Sharma, S., Papadakis, M. “Interpreting the Athlete’s EKG: Are All Repolarization Anomalies Created Equal?” Circulation, January 2015. Zaidi, A., Sheikh, N., Jongman, J., Gati, S., Panoulas, V., Carr-White, G., Papadakis, M., Sharma, R., Behr, E., Sharma, S. “Clinical Differentiation Between Physiological Remodelling and Arrythmogenic Right Ventricular Cardiomyopathy in Athletes With Marked Electrocardiographic Repolarisation Anomalies.” Journal of the American College of Cardiology, June 2015. Sharma, S., Merghani, A., Mont, L. “Exercise and the heart: the good, the bad, and the ugly.” European Heart Journal, June 2015. Merghani, A., Malhotra, A., Sharma, S. “The U-shaped relationship between exercise and cardiac morbidity.” Trends in Cardiovascular Medicine, June 2015. Robertus, J.L, Sheppard, M.N. “The CRY Sudden Cardiac Death

• Database. 18 Years of Referral for Expert Opinion.” Heart, June

2015.

Papers published in 2015

Robertus, J.L., Sheppard, M.N., Burrell, A. “The Pathological Disease Spectrum of Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) in Sudden Cardiac Death Emphasising Biventricular involvement and Challenges in Diagnosis.” Heart, June 2015. D’Silva, A., Papadakis, M. “Sudden Cardiac Death in Athletes.” European Cardiology Review, July 2015 Sheikh, N., Papadakis, M., Schnell, F., Panoulas, V., Malhotra, A., Wilson, M., Carré, F., Sharma, S. “Clinical Profile of Athletes With Hypertrophic Cardiomyopathy.” Circulation: Cardiovascular Imaging, July 2015. Steriotis, A., Sharma, S. “Risk Stratification in Hypertrophic Cardiomyopathy.” European Cardiology Review, July 2015. Zaidi, A., Sharma, S. “Arrhythmogenic right ventricular remodelling in endurance athletes: Pandora’s box or Achilles’ heel?” European Heart Journal, August 2015.

Papers published in 2015

Dhutia, H., Malhotra, A., Parpia, S., Gabus, V., Finocchiaro, G., Mellor, G., Merghani, A., Millar, L., Narain, R., Sheikh, N., Behr, E.R., Papadakis, M., Sharma, S. “The prevalence and significance of a short QT interval in 18,825 low-risk individuals including athletes.” British Journal of Sports Medicine, September 2015. Sharma, S., Millar, L. “Should Preparticipation Cardiovascular Screening of Athletes Include ECG? Yes: Screening ECG Is Cost- Effective.” American Family Physician, September 2015. Nademanee, K., Raju, H., de Noronha, S.V., Papadakis, M., Robinson, L., Rothery, S. Makita, N. Kowase, S., Boonmee, N., Vitayakritsirikul, V., Ratanarapee, S., Sharma, S., van der Wal, A.C., Christiansen, M., Tan, H.L., Wilde, A.A., Nogami, A., Sheppard, M.N, Veerakul, G., Behr, E.R. “Fibrosis, Connexin-43, and Conduction Abnormalities in the Brugada Syndrome.” Journal of the American College of Cardiology, November 2015. Calore, C., Zorzi, A., Sheikh, N., Nese, A., Facci, M., Malhotra, A., Zaidi, A., Schiavon, M., Pelliccia, A., Sharma, S., Corrado, D. “Electrocardiographic anterior T-wave inversion in athletes of different ethnicities: differential diagnosis between athlete's heart and cardiomyopathy.” European Heart Journal, November 2015.

Papers published in 2015

Zaidi, A., Sheikh, N., Jongman, J.K., Gati, S., Panoulas, V.F., Carr-White, G., Papadakis, M., Sharma, R., Behr, E.R., Sharma, S. “Understanding the Mechanism of T-Wave Inversion in Athletes May Be Key to Best Management.” Journal of the American College of Cardiology, December 2015. Highlight from 2015 ESC 2015 - ESC365 Sudden cardiac death in the young in Europe - State of the art lecture Session: Cardiac arrest/sudden cardiac death in the young Presenter: A A M Wilde (Amsterdam,NL) (18.09) ‘this is, I think, one of the most important studies in recent years’. Looking forward to 2016 British Cardiac Society 2016 The Sir Thomas Lewis Lecture (Prediction and prevention of sudden cardiac death in the young) Professor Michael Ackerman from the Mayo Clinic.

Research

Why is there the focus on sports cardiology Most young sudden cardiac deaths do not occur in elite athletes

Professor Sharma is now regarded as the leading sports cardiologist in the world. Sports cardiology is no just about elite athletes, it represents fit and healthy young people. Sports cardiology is an interchangeable term with young hearts The conditions we are looking for are those which people are born with or they have inherited The hearts of people before their lifestyle has taken hold and had an impact, something which usually starts to occur after the age of 35 The conditions are not caused by lifestyle or being a smoker To be able to screen healthy people you need to understand athletes

Research

Why is there the focus on sports cardiology Why not focus on genetics

When CRY funds research we fund people / doctors CRY’s research is applied – at the end you also have a specialist Genetics are very expensive to conduct in research You can spend a lot on a study with no results Our doctors approach the BHF or others for grants when we need to investigate genetics (£100,000s) Genetics is research which will identifying other families members after a death CRY’s research focuses on trying to prevent the tragedy Not all these conditions are genetic, some are acquired or congenital

5 10 15 20 25 30 35 40 45 ESC Recommendations Seattle Criteria #cryresearch white athletes black athletes

Reducing false positives Reducing the costs Making a national screening programme feasible

Referrals after abnormal findings

Research

#cryresearch

Healthy heart vs. Heart condition

Healthy heart Heart condition

Healthy heart Heart condition

#cryresearch is reducing the uncertainty

?

?

Reducing the grey area Improving sensitivity of tests

Research

#cryresearch

Professor Sanjay Sharma

1995

CRY founded by Alison Cox

1996

• CRY’s Cardiologist
• First CRY

screening

• First publications

in YSCD

2005

• 1st CRY Research

Fellowship grant

• NSF Chapter 8

(Private Members Bill)

2015

• 100+ publications
• 20,000

screening/yr

• 80,000 people

tested

• International

guidelines “CRYteria” #cryresearch

NSF Chapter 8 NICE T Loc CRY Services testmyheart CRY CCP CRY CSC CRY ICCC Support ESC guidelines AHA guidelines NSC rec.

Research

Inherited Cardiovascular Conditions Sports Cardiology Cardiac Screening Epidemiology Genetics Cardiac Pathology Psychology

Practice

NHS Referral After a sudden death NHS Referral after symptoms Counselling

Policy

Government / NHS policy IOC, ICU, RFU, RFL, LTA, FIFA.. Schools Universities Pilots..

Research

Informing Policy and Practice

CRY families