Treatments and research
Registry
An organised record of people with a condition who have agreed to be contacted or counted.
What it means
Registries do two things. They show how many people are affected and where, which shapes services and funding, and they let researchers reach people who might want to join a study. What is collected and who can see it varies, and is set out before joining.
Why you might hear it
- Joining one is often suggested as a low-effort way to help research.
- Trial teams frequently recruit through them.
Related words
People who may help
Where Compass goes into this
About this explanation
These are plain explanations of words you may come across, not advice about your own situation. Where a word matters to a decision, the question pages go into it properly, and your own team is the place to take it.