What taking part involves
From the first phone call to the last follow-up, here is what usually happens, what you can ask for and what you can refuse.
A study is a two-way choice
The study team decides whether you fit the study. You decide whether the study fits your life: the travel, the time, the tests and the unknowns. Saying no at any stage is normal, and nobody needs a reason.
The stages, in order
Every study differs in detail, but most follow this shape.
- 01
First contact
You call or write to the study team. They describe the study in outline and ask a few questions to see whether a screening visit makes sense.
- 02
Consent
The team goes through the consent form with you: what the study tests, what happens at each visit, the risks they know of, and what you can expect if you leave. You sign only when you are ready.
- 03
Screening
Tests check whether the study is a safe and suitable fit. Many people do not go on from here, and that is normal; the team should tell you why.
- 04
Study visits
Treatment, tests and questionnaires follow the schedule in the consent form. You can ask to see that schedule before you start.
- 05
Follow-up and the end
Some studies check in for months or years after the last dose. When the study closes, ask how and when you will hear about the results.
Rights you keep throughout
These come with every study, whoever runs it.
You can stop at any time
Leaving a study never costs you your usual care. You can say no on the first day or the last, and you do not owe anyone a reason.
Applies from screening to the final visit
You get the consent form to take home
Nobody should ask you to sign on the spot. Read it at home, with family or your own doctor, and come back with questions.
Applies before you agree to anything
You keep your own doctor
A study adds a team to your care; it does not replace the doctor you already see. Ask the study team to keep them informed.
Applies for as long as you take part
Your privacy is protected by the study
Study records use a code instead of your name, and the consent form says who can see what. Ask about anything that is unclear.
Applies during and after the study
You can ask the same question twice
If an answer did not make sense, ask again, or ask someone else on the team. A good study team expects it.
Applies at every visit
Costs and time: ask early
Who pays for what differs from study to study. These are the questions worth settling before your first visit.
Study tests and medicine
Usually covered by the study. Ask what, if anything, will be billed to your insurance.
Travel and parking
Some studies help with these. Ask before your first visit, not after.
Time off and childcare
Rarely covered, so it is worth asking how long each visit really lasts.
Your usual care
Still billed as it is now. Ask which visits are study visits and which are routine.
Hear about research in the area you follow.
Sign up once with the area you care about. We send an occasional update by email, and by text if you choose, and no more than 4 texts in any month.