RLS is a marginal phenomenon in the media and unfortunately also in medical perception. This is about to change - as shown by the new ICD-11 disease catalogue.
The International Classification of Diseases (ICD) is a globally recognised system used to give uniform names to medical diagnoses. ICD stands for "International Statistical Classification of Diseases and Related Health Problems".
The ICD is administered by the WHO and used in countries all over the world. Each disease is assigned an ICD code. This is found in patient records, including hospital records, medical charts, visit reports and bills. These codes ensure that patients receive the right treatment and that all medical services are billed correctly. Insurance companies expect the codes to match between a condition and the treatment provided. The codes are used in clinical trials to recruit and track subjects. The ICD is also useful, for example, to facilitate data exchange. ICD codes are also used worldwide to collect health statistics such as morbidity (disease) and mortality (causes of death). This is particularly useful for collecting data on non-communicable diseases.
The 11th version of the International Classification of Diseases 11 (ICD 11) came into force on 1 January 2022. And it is here that we find a significant - one might almost say historic - change for RLS sufferers. In the older versions of the ICD, RLS was still classified under the collective group "Other extrapyramidal diseases and movement disorders". In the new ICD-11, RLS has been given its own code under sleep-related movement disorders: "7A80 - Restless Legs Syndrome".
What does this mean exactly? It means first and foremost that the WHO perceives Restless Legs Syndrome in a much clearer way, giving it a completely new meaning. This is more than just an abstract health policy decision but will result in RLS being perceived much more by doctors and scientists than was previously the case.
Written by Ralf Wenzel, RLS advocacy group Hamburg-Bergedorf (Germany)