Patient Circle
Not open yet. A Patient Circle would be a closed space for people living with one condition, and those who care for them, to make sense of its research together: what is being tested, what changed, what taking part is like, and what to ask next. We are asking first which conditions people want one for.
What it would be
- One circle per condition, for anyone living with it — whether or not they are thinking of a trial.
- Changes to the condition’s studies, from the registry, beside what members say about taking part: screening, visits, travel, what they wish they had asked.
- Your own experience, not advice. Questions about your care belong with your doctor or the study team.
- Only people who say they are a patient, a participant or a caregiver could read it. Nobody’s condition is checked, and it would say so.
- Pseudonyms only. No member list. You could leave, and delete what you wrote, at any time.
- Nothing written there sold, shared, or sent to study teams or sponsors.
How the interest count works
Condition pages ask “Want a Patient Circle for this condition?”. Pressing “I’d join this” adds one to that condition’s count. We record the count and nothing else: not your account, not your address. Your browser remembers that you pressed it, so it counts once from there.
We will open a circle where the interest is clear, there are studies to talk about, and we can review it safely. Rare conditions may share a circle with related ones.
Meanwhile
On any study page you can already go through its eligibility criteria one by one, kept in your browser only, and take the list to your doctor or the study team. Start from the conditions.