Since the start of Project Y in 2016 by the MS Centrum Amsterdam, 452 people with multiple sclerosis (MS) born in the Netherlands in 1966 have been found. More than 360 people of them participated in Project Y, which includes: visiting Amsterdam UMC, location VUmc, a home visit or a telephone interview. In addition, 125 people without MS participated. The first results of this project are now published in the journal Multiple Sclerosis and Related Disorders. It describes that the prevalence for MS for people born in 1966 is 189 in 100,000.

The disease MS progresses differently in everyone. For some, the disease starts when they are 20 years old and for others it doesn't start until they are 40 years old. Some patients quickly become wheelchair-bond, while others have no limitations after many years of MS. There is no good explanation for these large differences between people with MS. Project Y has collected data from as many people with MS born in 1966 as possible. This is an exceptional dataset that many researchers worldwide can use to better understand MS disease and to identify options for better treatments.

Prevalence higher

This first publication with data from Project Y is a review article describing the research protocol and the group of participants. In addition, it has become clear that the prevalence of MS for birth year 1966 is 1.89 per 1,000 people. This is much higher than the 1 in 1,000 which was used before. Whether this also applies to all other birth years is not known. However, the assumption that has been made for years that there are 18,000 people with MS in the Netherlands, seems too low. Based on the data from Project Y and data from surrounding countries, it can be stated that there are at least 25,000 people with MS in the Netherlands. This might still be an underestimation.

Read the publication in Multiple Sclerosis and Related Disorders: Project Y: The search for clues explaining phenotype variability in MS