Multiple sclerosis registries in Europe – An updated mapping survey

There are significant geographical differences with the highest prevalence occurring in Northern Europe and North America (over 100/100,000) as compared to 2/100,000 in Japan . MS patients are typically diagnosed between the ages of 20 and 50 years and will in most cases be expected to live for a long time with MS. The value of MS registries for MS patients, health care providers and regulators is becoming increasingly recognised . The collection of patient data into a registry can benefit the patients by enabling the clinician to prospectively follow the individual patient concerning disease progression, treatment response and side effects, and other parameters including patient reported outcomes (PRO) measures . From a societal viewpoint there are also many advantages of using data from MS registries, especially within areas of epidemiology and treatment studies, such as post marketing effectiveness, comparative or post-authorisation safety studies . This was recognised by regulatory bodies in the EU resulting in the first EMA-Workshop on MS-Registries in July 2017 in London . Therefore it is important to improve and promote the collection of safety data by MS registries as this might provide an opportunity for the MS registries to replace the typical drug specific post-authorization safety studies.