Headline: Experts Find Test For Sudden Death Syndrome

[Tim Stewart]

Copyright 2003 The Press Association Limited
Press Association

June 2, 2003, Monday

SECTION: HOME NEWS

LENGTH: 442 words

HEADLINE: EXPERTS FIND TEST FOR SUDDEN DEATH SYNDROME

BYLINE: Julie Wheldon, Health Correspondent, PA News

BODY:
Experts have discovered a new test which will help predict who might be at
risk from Sudden Adult Death Syndrome, it was announced today.

A study funded by the British Heart Foundation (BHF) has found a way to
assess the risk of Sudden Adult Death Syndrome (SADS) by measuring the amount of
"electrical disorganisation" in the heart.

The discovery means those identified as being at high risk of SADS could be
fitted with a device which could kick-start the heart, and so prevent them
dying.

It is thought about one in 500 people in the UK suffers from Hypertrophic
Cardiomyopathy which is one type of SADS and the most common cause of sudden
death in young athletes.

The study found, for the first time, that identifying this type of electrical
disturbance could help prevent SADS in people suffering from a range of
different diseases where the heart may seem otherwise normal in routine tests.

SADS occurs when the heart goes into ventricular fibrillation (VF), or
cardiac arrest, and is unable to pump blood round the body effectively.

Until now it has been difficult to assess whether someone is at risk from
sudden death because there is little understanding of the mechanisms that cause
VF.

The new research paves the way for a test so that experts can assess if
someone is at risk of SADS.

Those found to be at high risk could then be fitted with a device called an
internal cardio defibrillator, which would help prevent sudden death by
kick-starting the heart.

The study was carried out by researchers in England, Poland, the Netherlands
and France.

Lead researcher Dr Richard Saumarez, of Papworth Hospital, near Cambridge,
said: "In the past the ways of telling whether someone was at risk from the
onset of sudden death were very limited.

"This new research identifies a mechanism by which SADS occurs that can be
detected in patients at risk."

Professor Sir Charles George, Medical Director at the British Heart
Foundation, said; "This research is a significant step in the better
understanding of SADS.

"People suffering from SADS may not have any symptoms from the condition and
a fatal cardiac arrest may be the first sign that it is present in a family.

"In time this test could be used for such people and their relatives to
determine just what their real risk is and help prevent further deaths in the
family."

Alison Cox of the charity Cardiac Risk in the Young (CRY) said: "This is a
very exciting and important step in understanding SADS and how we can identify
those at risk.

"Any research in this area is fantastic and it will offer great reassurance
to our families that something is being done."

LOAD-DATE: June 2, 2003

[Tim Stewart]

Copyright 2003 Regional Independent Media

Yorkshire Post

June 1, 2003

LENGTH: 291 words

HEADLINE: Experts discover test for sudden adult death risk

SOURCE: Yorkshire Post

BODY:


Experts have discovered a new test which will help predict who might be at
risk from Sudden Adult Death Syndrome.





A study funded by the British Heart Foundation has found a way to assess the
risk of Sads by measuring the amount of electrical disorganisation in the heart.

The discovery means those identified as being at high risk of Sads could be
fitted with a device which could kick-start the heart, and so prevent them
dying.

It is thought about one in 500 people in the UK suffers from hypertrophic
cardiomyopathy which is one type of Sads and the most common cause of sudden
death in young athletes.

The study found, for the first time, that identifying this type of electrical
disturbance could help prevent Sads in people suffering from a range of
different diseases where the heart may seem otherwise normal in routine tests.

Sads occurs when the heart goes into ventricular fibrillation (VF), or
cardiac arrest, and is unable to pump blood round the body effectively. Until
now it has been difficult to assess whether someone is at risk from sudden death
because there is little understanding of the mechanisms that cause VF.

The study was carried out by researchers in England, Poland, the Netherlands
and France.

Alison Cox of the charity Cardiac Risk in the Young said: This is a very
exciting and important step in understanding Sads and how we can identify those
at risk.

Last month the Yorkshire Post highlighted the case of Craig Johnson, a
student in his final year of studies at Sheffield Hallam University whose death
has been put down to Sads.

He had been chatting to a friend in his car outside the university before
getting out to lock the door but became dizzy and collapsed to the floor.

LOAD-DATE: June 2, 2003

[Sarah]

This is the worst reporting I've ever read. What is the test? How is it done? Is this a fancy EPS? What in the world? Am I missing something? I've read the first one twice and I don't see anything about what the test actually _is_ --am I wrong?

weird.
S

[Tim Stewart]

Here is another one ... I don't write them, I just post them. :-)

Copyright Health Media Ltd 2003

Health Newswire Consumer

June 2, 2003

SECTION: Health Newswire Consumer

LENGTH: 316 words

HEADLINE: Test for "sudden adult death syndrome"

BYLINE: Health Newswire reporters

HIGHLIGHT:
Scientists may now be able to identify which people might be at an increased
risk of suffering from so-called sudden adult death syndrome (SADS).

BODY:


It is thought that SADS results from electrical "disorganisation" in the
heart, which causes lethal rhythms that can lead to sudden death as the heart is
unable to effectively pump blood around the body.

Previous studies have suggested that around 1 in 500 people in the UK suffer
from hypertrophic cardiomyopathy - a condition that is one form of SADS and the
most common cause of sudden death in young athletes.

Now researchers from Papworth Hospital near Cambridge have identified an
abnormality in the heart that will help doctors predict who is at risk from this
electrical disturbance.

The team say the findings should help prevent SADS in people suffering from
a range of different diseases including hypertrophic cardiomyopathy, dilated
cardiomyopathy and long QT syndrome - conditions in which the heart appears
normal in routine tests.

The findings pave the way for a new test that would be able to assess an
individual's risk from these lethal rhythms.

The researchers add that, once identified, people at high risk of SADS could
be fitted with a device called an internal cardio defibrillator that would help
kick start the heart into the correct rhythm.

Dr Saumarez, lead researcher for the project, said, "In the past, the ways
of telling whether someone was at risk from the onset of sudden death were very
limited. This new research identifies a mechanism by which SADS occurs that can
be detected in patients at risk."

Professor Sir Charles George, medical director at the British Heart
Foundation, which funded the study, added, "People suffering from SADS may not
have any symptoms from the condition and a fatal cardiac arrest may be the first
sign that it is present in a family.

"In time, this test could be used for such people and their relatives to
determine just what their real risk is and help prevent further deaths in the
family."

LOAD-DATE: June 2, 2003

[Tim Stewart]

Here is the actual press release. I don't beleive that there is any additional information available to report.

http://www.bhf.org.uk/news/index.asp?secondlevel=241&thirdlevel=809&artID=3691

[Bert]

Tim,

Thanks for posting the report. Anytime good news is availalble, proven or unproven, it is definitely uplifting. Thank you for taking time to post your findings.

Sincerely,

Bert

[Linda]

It would seem that this test is still in the developement/proving stage and not yet available, but exciting news to offer. We'll just have to wait and see how it unfolds. Tim does a great job at finding and posting these info pieces. Thanks, Tim. I know you'll find the "rest of the story" when it becomes available. Linda

[Tim Stewart]

Copyright 2003 The Liverpool Daily Post & Echo Ltd

Daily Post (Liverpool)

June 3, 2003, Tuesday

SECTION: NEWS; Pg. 25

LENGTH: 396 words

HEADLINE: NEW TEST WARNING FOR HEART VICTIMS;
N WALES MOTHER WELCOMES DISCOVERY

BYLINE: CARL BUTLER

BODY:


EXPERTS have unveiled a new test to help predict people at risk from Sudden
Adult Death Syndrome.

The development has been welcomed by a North Wales mother who lost one
daughter to the killer gene but saved a second after persuading her to undergo
tests.

A study funded by the British Heart Foundation (BHF)has found a way to
assess the risk of Sudden Adult Death Syndrome (SADS)by measuring the amount of
"electrical disorganisation" in the heart.

The discovery means those identified as being at high risk of SADS could be
fitted with a device which could kick-start the heart and so prevent them dying.

Mrs Doreen Harley,from Connah's Quay, is the North Wales representative for
the charity Cardiac Risk in the Young (CRY)and has campaigned tirelessly to
introduce screening.

Her daughter Lisa Jane Browne, a 27-year-old nurse, fell victim to sudden
cardiac death in January 1998.

The family eventually discovered she had Long QT Syndrome.

The sound of her alarm going off one morning caused the abnormal gene to
stop her heart.

Mrs Harley and husband Terry were both screened following Lisa's's death and
Terry was diagnosed with the same condition, which is now controlled by
medication.

Last March tragedy almost struck the family for a second time when Mrs
Harley's's other daughter, Nurse Rachel Willn, 30,of Nuneaton, was wok en
suddenly by the shouting of her two-year-old son Adam. Rachel, who had acted on
the advice of her mum,has been tested for the condition.

And because medication proved unsuitable, she underwent surgery for an
implantable cardioverter defibrillator/pacemaker (ICD). When Rachel woke
suddenly her heart stopped and she blacked out but the ICD kick-started her
heart again.

She had her own children tested for the condition and discovered her eldest
son Jack, six, also has Long QT Syndrome. It is thought about one in 500 people
in the UK suffers from Hypertrophic Cardiomyopathy which is one type of SADS.

The latest study found,for the first time, that identifying this type of
electrical disturbance could help prevent SADS in people suffering from a range
of different diseases where the heart may seem otherwise normal in routine
tests.

The condition happens when the heart goes into ventricular fibrillation
(VF),or cardiac arrest,and is unable to pump blood round the body effectively.

GRAPHIC: Doreen Harley, whosedaughter,Lisa Jane Browne, right,died of Long QT;
Syndrome; Main picture: STACEY ROBERTS

LOAD-DATE: June 3, 2003

[Toogoofy317]

I don't know if this is related at all but I think it is so.

When I was getting my referral to go to Boston to see the NEMC group my cardiologist wrote up a report to convince the insurance company that I was in desperate need to get there he did mention about my EP study which at that time was negative. He later went to say " that there is a group in London that were able to show predictive electrophysiological studies, but their protocol is quite complex, requiring evaluated computerized mapping of the ventricles to evaluate fractionation of action potentials".

Came to find out though that I had 3 of 6 risk factors so I got an ICD. I just wonder if this is the same test that they have described in the press releases? If so what are the precentages of accurate diagnosis?

mary S.

[Laura]

Hi Tim,
Finally got to this post. thanks for posting all the articles, we can at least see that the research is out there.

Laura