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Updated: Oct 3, 2025

Comprehensive Autopsy Program for Individuals with Multiple Sclerosis
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Project Y: The search for clues explaining phenotype variability in MS.

Floor C Loonstra1, Lodewijk R J De Ruiter1, Djoeke Doesburg2

  • 1Department of Neurology, Amsterdam University Medical Centers, Vrije Universiteit, Amsterdam Neuroscience, Amsterdam MS Center, Amsterdam, the Netherlands.

Multiple Sclerosis and Related Disorders
|February 15, 2022
PubMed
Summary

Project Y is a unique birth cohort study for multiple sclerosis (MS) patients born in 1966. This study aims to find factors influencing MS disease variability, removing age as a confounding factor.

Keywords:
Multiple sclerosisPrevalence

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Area of Science:

  • Neurology
  • Epidemiology
  • Biomarker Research

Background:

  • Phenotypic variability in multiple sclerosis (MS) necessitates well-defined, unbiased cohort studies.
  • Age is a significant confounding factor in studying MS disease phenotypes.

Purpose of the Study:

  • To describe the design and characteristics of Project Y, a unique birth cohort.
  • To identify determinants of phenotypic variability in MS, controlling for age.

Main Methods:

  • Population-based, cross-sectional study of individuals born in 1966 in the Netherlands diagnosed with MS.
  • Comprehensive assessments including imaging, physical and cognitive measures, lifestyle factors, and biospecimen collection.
  • Inclusion of healthy controls for comparative analysis.

Main Results:

  • Identified 452 eligible MS patients; 367 MS patients and 125 healthy controls participated between December 2017 and January 2021.
  • Established a minimum prevalence of 189/100,000 for MS in individuals born in 1966 in the Netherlands.
  • Collected extensive data and biosamples for future biomarker research.

Conclusions:

  • Project Y provides a unique cohort to study MS phenotypic variability independent of age.
  • The study suggests a potentially higher MS prevalence in the Netherlands than previously estimated.
  • Ongoing research using Project Y data is expected to yield further insights into MS determinants.