Multiple Sclerosis: Why Your MS Story Is Worth More to Research

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Multiple sclerosis follows a different course in every person: relapses and remissions, slow progression, or something in between, with symptoms from fatigue and numbness to problems with walking, vision and thinking. Which disease-modifying treatment works for whom, how symptoms are best managed, and how life with MS changes over years are questions research keeps asking. The answers sit with the people living with it.

How many people live with it

The Atlas of MS estimated that a total of 2.8 million people live with MS worldwide (35.9 per 100,000 population), with a pooled incidence rate of 2.1 per 100,000 persons per year across 75 reporting countries.

That makes MS rare by the European Union's definition, which counts a condition as rare when it affects not more than five in 10,000 persons. Research on a rare condition has fewer people to learn from and pays more for each one it finds: trial costs per patient for orphan drugs are about 2.5 times those for other drugs. Why rare disease data is worth more.

The records worth keeping

NICE's 2022 guideline on MS describes the care that produces most of the records:

• MRI and laboratory findings at diagnosis: MS is diagnosed using a combination of history, examination, MRI and laboratory findings, following the McDonald criteria.
• A comprehensive review at least once a year of all aspects of care, including an assessment of cognition.
• Medication reviews: symptom medicines reviewed at least annually once the optimal dose has been reached, and fatigue treatments reviewed regularly for effectiveness, safety and acceptability.

Your MRI reports, neurology letters and the history of every treatment you have been on, with when and why it changed, are the backbone of an MS record. A diary of relapses and symptoms fills in what happens between appointments. If you do not have your reports, ask your clinic for a copy.

What people with MS are paid for research

Research firms pay people with MS and their carers for their experience. A listing of current studies shows $40 for a 20-minute online survey with people with clinically isolated syndrome, relapsing remitting or secondary progressive MS, and $50 for a 25-minute survey with MS caregivers.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for, and MS carries its rarity premium of about 2.9 times. A complete MS story with a year of the records the guideline lists comes to about $313 per licence on the benchmark today, and with 60 diary entries about $844 per licence. Every line and its source is on the multiple sclerosis page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried. You can add MRI reports, letters and diary pages as PDFs or photos, and the AI reads them into your own medical file. If you care for someone with MS, you can share their story for them, with their permission. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.