What we hold, who sees it, and how to get it back
This page is the plain-language version. The Privacy policy is the formal one, and if the two ever disagree, tell us, because one of them is wrong.
What we hold
What you typed into the join form, and a record of what we have sent you and what you said to it. That is the whole registry record. We do not buy data about you from anywhere else and we do not add to your record from other sources.
Who can see it
The registry team. Not sponsors, not research sites, not advertisers. When a sponsor asks how many people might fit a study, they get a number, not a list.
What leaves, and when
Your name and contact details go to one research site when you have said yes to one study. That is the only routine way anything identifiable leaves the registry.
How long we keep it
Until you ask us to delete it. A registry is only useful if it stays, so we do not expire records on a timer — but it is yours, and one email ends it.
Four things you can ask for, any time
A copy of everything
Ask and we send you your whole record, including what we have sent you and when.
A correction
If something is wrong, tell us and we change it. You do not need to explain why.
Deletion
We delete the record and your contact details, and we confirm in writing when it is done. If your details already went to a research site for a study you agreed to, that site holds its own copy under its own obligations, and we will tell you who to ask.
To stop messages without leaving
You can turn off texts, or email, or both, and stay on the registry. Reply STOP to any text, or write to us.