CRY 'paves the way' for how a national cardiac screening programme could
look in 2012
16th October 2009
A pioneering new development to test children
born in 1995 across the South East of England
Every day at least one family in the UK (12
young, apparently fit people, die every week) will suffer the
trauma of loosing a young (35 and under) person to an
undiagnosed heart condition. These genetic conditions
drastically affect thousands of people every year. To coincide with Raising Awareness Week, CRY has
announced the first initiative in the UK to screen every
14-year-old born in 1995 (the year that CRY was founded) across
the South East.
The launch of this important new programme
coincides with the announcement of the world’s first specialist,
multi-disciplinary ‘centre’ dedicated to young* sudden cardiac
death, to be based at St George’s
Healthcare NHS Trust, South West London.
(*aged 35 and under)
Dr Steve Cox, Director of Screening at CRY says; “We
are currently screening 1000s of young people every year aged between 14
and 35. However, this is just the start. We need to know more about what
a national screening programme will “look like”, when it is best to
introduce screening and how to make this process as easy as possible for
every young person who wants to be tested.”
The screening initiative will help to lay the foundations
for a national programme in the future. The focus on 14-year-olds is
because post-puberty is the earliest age that proactive screening is
viable.
This unique programme has been made possible thanks to a
charitable grant from ICAP, the interdealer broker.
From July 2010 CRY will be running regular cardiac testing clinics
that will be available free of charge to any person in
the South East who was born in 1995. The venues and dates of
these clinics will be updated on this webpage as they are
confirmed.
If
you would like to register for these screenings
please
click here
For
more information or questions on screening please go to
CRY's Q&A page
If you
have any specific questions you would like us to answer, please
send them to
1995@c-r-y.org.uk and write "Question" in the subject
line.
If you are unable to make use of this screening initiative but
would still like to be tested please go to
www.c-r-y.org.uk/ecg.htm
for the next screening event in your area. Some of these events
may require a subsidised payment of £35.
Watch CRY Patron David Walliams having his heart screened
Dr Cox adds, “It is right that we aspire to offer
testing to young people at a time when they are making important
decisions about their future – and before they are forced to make
‘sacrifices’ and changes to their ‘dreams’ and aspirations. That is
what this screening programme is about – a commitment to the future of
young people.”
For the first time, this new centre will combine three
essential features of CRY’s mission to eliminate young sudden cardiac
death: offering services for affected families, competitive athletes and
the general population.
'Affected
families' will attend the first dedicated inherited cardiovascular
disease and sports cardiology clinic in the world. The 'general
population' will be able to access nationwide screening services through
the rapidly developing mobile screening programme co-ordinated from the
Centre at St George’s Healthcare Trust. Elite athletes will attend the
world renowned CRY Centre for Sports Cardiology.
Spearheaded by the charity’s consultant cardiologist,
Sanjay Sharma, the new centre will provide a ‘one stop shop’ for young
people and ‘affected families’ who wish to be screened for potentially
life-threatening cardiac problems.
Chief Exec and Founder of the charity, Alison Cox MBE,
says; “This ICAP funding is a huge milestone for CRY and takes us
another step closer to realising our dream of being able to offer heart
testing to all young people in the UK. I launched CRY 14 years ago in
1995 – and it therefore feels ‘right’ to be offering young people
turning “14” the opportunity to be screened by some of the world’s
leading experts and to hopefully to be able to reassure them that they
are in good health.
“Those that play sport are particularly at risk, if they
carry an undetected heart condition, and so we are really pleased to
have this opportunity to offer these fully funded tests which will
unquestionably save lives.”
She continues; “80% of young people have no signs or
symptoms and so the only way to detect a potentially sinister cardiac
abnormality is by having a simple screening test.
“These are all treatable conditions and, if diagnosed in
time and with appropriate treatment, lives are saved. Young people, with
their whole lives ahead of them are dying needlessly and their legacy of
horrific suffering for those that love them is truly unbearable.”
Experts at the Centre will be able to support teenagers
in the journey from screening through to possible diagnosis and
treatment and, where necessary, counselling and support. Specialist
researchers will also be based in the new centre working on the genetics
of hereditary cardiac defects and helping families to understand their
‘heart history’.
Dr Sharma says; “ONS stats indicate that 600 young people die suddenly every year in
the UK from sudden cardiac death – and that figure could be a
conservative estimate. These young people are in the prime of their
lives – and no family should have to go through the terrible heartbreak
of losing a son, daughter, partner or sibling without warning and
without explanation.”
“The tragedy is that these deaths are not
'freak' accidents. They are preventable deaths that could have been
avoided if young people – especially those involved in regular sport –
were being offered screening. I am delighted to be taking up this
exciting position and believe this new unit will play a vital role in
increasing knowledge and awareness of these devastating conditions among
the public and health professionals both in the UK and on an
international level.”
The
project is also being supported by healthcare company Philips, who has
donated state of the art screening equipment. Earlier this year, CRY
launched a 10 week mobile screening programme with Philips (testmyheart.org)
testing around 2,500 young people in locations across the UK – at least
14 people were found to have serious cardiac conditions.
Screening saves lives – and parents, young people,
teachers or sports clubs can access CRY’s specialist service by logging
onto
www.c-r-y.org.uk. Subsidised screening costs £35 per person but
will be free of charge for all children born in 1995, commencing early
2010. Please call 01737 363 222 for more details.
ENDS
For more information or to arrange an
interview with a CRY family, Dr Sharma or a celebrity supporter, please
call: THE CRY PRESS OFFICE: JO HUDSON or HEATHER CHURCHOUSE ON 020 8786
3860 / 0770 948 7959:
jo.hudson@trinitypr.co.uk
Notes to editors:
St George’s
Healthcare Trust was the first hospital in the UK to run a family
screening clinic thanks to a donation from CRY (back in 1997) of an
echocardiogram machine. It was also where Dr Sanjay Sharma first made a
commitment, as a young research fellow, to young sudden cardiac death
and screening
CRY was founded in May 1995 to raise
awareness of Sudden Arrhythmia Death Syndrome
(SADS).As well as campaigning and lobbying and the
provision of its subsidised cardiac screening programme for young people
(35 and under), the charity also provides counselling support to
bereaved families and individuals who may be diagnosed.
CRY works closely with a number of MPs to
try and improve awareness of sudden cardiac deaths in young people.
This has resulted in the creation of the CRY All Party Parliamentary
Group (currently 123 members), and the proposal of the Cardiac Risk in
the Young (Screening) Bill which was the catalyst for a new chapter of
NSF guidelines (Chapter 8).
Sudden Cardiac Death (SCD) is an umbrella
term for a number of different heart conditions that affect fit and
healthy people which, if not treated, can result in a dramatic and or /
spontaneous death. In about one in 20 cases of sudden cardiac death, no
recognised cause can be found – even after post-mortem. This is then
called Sudden Arrhythmic Death Syndrome (SADS). Many experts are now
claiming that the actual number of deaths recorded could just be
‘the tip of the iceberg’ with many causes being wrongly recorded
as asthma, epilepsy or even drowning.
Call us at 01737 363 222 or email us at
cry@c-r-y.org.uk
CRY, Unit 7, Epsom Downs Metro
Centre, Waterfield, Tadworth, Surrey, KT20 5LR
A Company Limited by Guarantee.
Registered in England No. 3052965
Registered Office 35 - 37 Grosvenor
Gardens, London SW1 0BY. Registered Charity No. 1050845
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