How a study actually reaches you
The short version: sponsors describe what they need, we search our own records, and we contact the people who match. Your details do not move until you say so.
A sponsor tells us what a study needs
Age range, treatment history, how long since a diagnosis, how far someone can reasonably travel. They do this without ever seeing the registry.
We run the search ourselves
Inside our own system. The sponsor gets a count — how many people might fit — and nothing that identifies anyone.
We write to the people who match
By email, or by text if you asked for that. The message names the study, the sponsor, the site and what would be involved. It is an invitation to read, not an enrolment.
Only if you say yes do we pass anything on
Your name and contact details go to that one research site, for that one study. The site then takes you through informed consent properly, in person.
Sponsors pay us to run the registry
That is the business, and we would rather say it plainly. Sponsors pay for the service of reaching a relevant group. We are not paid a bounty per person enrolled, because paying per head is what turns recruitment into pressure.
Never from members, never for your data
Joining is free and always will be. We do not sell registry data, we do not licence it, and we do not provide identifiable records to anyone who has not been given permission by the person they belong to.
About studies and how we handle them
No. You hear from us when your record matches something, which for most people is not often. Trials are specific, and a register that emailed everyone about everything would be useless to members and to sponsors.
Nothing happens. Your record stays as it is, you stay on the registry, and it has no effect on anything we send you in future. You never have to give a reason.
Yes. Write to us and we will tell you every study you were contacted about and whether your details were passed on. We keep that record precisely so it can be produced.
No. Studies are run by research sites and sponsors. Camden is the registry in between. We have no role in the study itself, we do not see your study data, and we do not get results about you.
It stays in the registry unless you ask us to remove it. Taking part in one study does not remove you, and it does not commit you to anything afterwards.