This week we saw one of the most important steps in our campaign 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 Organization (WHO).
The WHO has just released the ICD 11 code (International Classification of Diseases) addressing one of the most crucial issues that Cardiac Risk in the Young 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. 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.
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.
The specific causes of death can be found on the WHO website
BC64 SADS – Sudden Arrhythmic Death Syndrome
BC43.6 ARVC – Arrhythmogenic Ventricular Cardiomyopathy (ARVC)
BC65.1 Brugada Syndrome
BC65.2 Short QT
What are ICD codes, why are they important?
“The International Classification of Diseases is the standard diagnostic tool for epidemiology, health management, and clinical purposes. This includes the analysis of the general health situation of population groups. It is used to monitor the incidence and prevalence of diseases and other health problems, providing a picture of the general health situation of countries and populations.”
“The ICD is the foundation for identifying health trends and statistics worldwide, and contains around 55 000 unique codes for injuries, diseases and causes of death. It provides a common language that allows health professionals to share health information across the globe.” Read the full press release
Dr Steven Cox
CRY Chief Executive