OCD: Why Your Experience of Treatment Matters 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.

Obsessive-compulsive disorder is often misunderstood as tidiness. For the people who have it, it is intrusive thoughts and rituals that can take hours a day, and many keep it hidden for years before seeking help. Therapy with exposure and response prevention and certain medicines help many people, but not all, and not always for long. What worked, how long it took and what made it hard to keep going are what research on OCD needs, told by the people who know.

How many people live with it

A meta-analysis of 34 community studies found current, period and lifetime OCD prevalence of 1.1%, 0.8% and 1.3% among adults.

The records worth keeping

NICE's guideline on OCD describes the care that leaves records:

• SSRI treatment over time: medicine is usually continued for a long period, and reviewed when an adult has taken an SSRI for 12 months after remission.
• Heart checks before some medicines: an ECG and a blood pressure measurement before prescribing clomipramine for people at risk.
• A written agreement on who monitors and treats you, a copy of which should be given to the patient.

Letters from the services that treated you and your own notes on what changed are enough to start. If you want copies of your records, ask your practice or mental health service.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete OCD story with the records the guideline lists comes to about $93 per licence on the benchmark today. Every line and its source is on the OCD 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.

On your own terms

You decide what to share, and nothing asks you to describe your thoughts in more detail than you want to. You read the de-identified summary before anything goes anywhere: no names, no place finer than a country, no exact dates, and you can withdraw at any time. Parents can share the story of a child with OCD, as their parent or guardian.

Start your story, or read is it safe to share your health data first.