Initial Presentation of Multiple Sclerosis and Pathways to Diagnosis
Research type
Research Study
Full title
Initial Presentation of Multiple Sclerosis and Pathways to Diagnosis
IRAS ID
355947
Contact name
Hiba Adan
Contact email
Sponsor organisation
Queen Mary University of London
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
This study will explore the experiences of people living with the neurological disease multiple sclerosis (MS) before they were diagnosed with MS. To date, no study has explored the experiences of people with MS before their diagnosis. Studies have shown that people spend more than ten years interacting with healthcare services before they are diagnosed with MS. However, we know very little about what occurs during these interactions. This study aims to fill this gap.
We aim to understand how people make sense of and interpret their early symptoms, when they decide to seek help, and how they communicate their symptoms with healthcare professionals. We are interested in learning about the factors that shape these decisions and experiences, which may include social, cultural and systemic influences. For instance, social factors like socioeconomic status, cultural factors such as language barriers, and systemic factors including racism, may influence the pathways to diagnosis.
We will recruit participants who have been newly diagnosed with MS in the last 12 months, are aged 18 years and over, and live in the United Kingdom. We will aim to include people who are under-represented in MS research, such as sexual and gender minorities, minoritised ethnic backgrounds, and people who may be digitally excluded.
Participants will answer a short demographic questionnaire and take part in an interview lasting approximately one hour, with scheduled breaks in between. The questionnaire and interview will be online via Microsoft Teams (video or audio, depending on participant preferences), or telephone, or in person, depending on the participant's preference. In-person data collection will be in a private room at one of the Queen Mary University of London campuses.
This study is funded by the Economic and Social Research Council/London Interdisciplinary Doctoral Training Partnership and will take 2 years to complete, forming part of a 3-year PhD research project.
REC name
London - Chelsea Research Ethics Committee
REC reference
26/PR/0056
Date of REC Opinion
9 Mar 2026
REC opinion
Further Information Favourable Opinion