A major milestone for bereaved families as the WHO recognised the causes of young sudden cardiac death

Posted On: 
21st June 2018

Below is the respnse from Dr Steven Cox (Cardiac Risk in the Young CEO) in response to this week’s news that WHO has announced a new ICD code for all causes of young sudden cardiac death

Dr Steven Cox, Chief Executive of CRY, comments;

“This week marks one of the most important steps in the campaign led by the charity Cardiac Risk in the Young (CRY) to prevent Young Sudden Cardiac Deaths

“For the first time, causes of death including SADS, ARVC, Short QT (alongside Long QT, Brugada and hypertrophic cardiomyopathy) are now being recognised by the World Health Organisation (WHO).

“The WHO has just released the ICD 11 code (International Classification of Diseases) addressing one of the most crucial issues that CRY has been campaigning to address; that of ensuring the correct, accurate and official recording of all the most common causes of Young Sudden Cardiac Deaths (YSCD).

“Previously, the way in which deaths have been recorded by the Office of National Statistics (ONS) had led to policy makers referring to rates of deaths from YSCD incorrectly. This has had devastating consequences in terms of informing decision makers when considering vital policy such as the implementation of a screening programme for young people in the UK.

“An example of this is the letter from the UK statistics authority to MPs to  answer the question about the number of sudden cardiac deaths https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2016-04-20/34908. This shows how many of the young people who die suddenly of cardiac conditions have their death incorrectly recorded - and crucially this data forms the basis of UK policy to prevent these tragedies.

“This new announcement from the WHO is therefore a significant breakthrough in CRY’s ongoing campaign to establish a national strategy to prevent young sudden cardiac deaths.

“We believe that once this new code is fully implemented it will finally be possible to establish that these cardiac conditions are one of the most common causes of death in young people and much more should be done by our government to prevent these tragedies.  

“In my opinion, this is vitally important. Until now SADS deaths could be recorded in any number of ways including “cause unknown or cause unspecified”. But we know these deaths are usually caused by undiagnosed heart conditions. The conditions are often genetic and the tragedies are preventable.

“This major milestone would not have happened without the incredible support from the thousands of families who support CRY throughout the country, enabling the CRY research team, led by Professor Sanjay Sharma, to publish academic papers which have without question changed policy and practice, not just in the UK, but throughout the world”

This launch of the WHO code coincides with the 100th MP signing up to support CRY’s campaign for a national strategy to prevent young sudden cardiac death #mpsupport4cry https://www.c-r-y.org.uk/my-pledge