Can you change your mind after joining?
Voluntary participation does not end at enrolment. The NIMH participant information explains that a volunteer can withdraw, and Inserm describes that principle in the French trial context too. You can say you no longer want to participate without turning the conversation into a defence of your reasons. If you are unsure whether you want to leave entirely or change one activity, explain the distinction. Ask what options the protocol permits. You do not need to decide that every part of participation must continue just because one part still feels acceptable.
Who should you contact, and what can you say?
Use the study contact in your information sheet or a verified number for the centre. An optional message is: “I would like to stop participating. Please tell me who can discuss treatment, follow-up and the administrative next steps with me.” You can ask for a private call if you do not want to explain details in writing. Keep a record of your request and ask for acknowledgment. If the coordinator is unavailable, ask the centre which investigator or other named contact can help. Do not rely on a directory enquiry as a substitute for contacting your actual study team.
Does stopping treatment mean stopping every contact?
Study treatment, research visits, optional recordings, questionnaires and later contact are not necessarily one single choice. Ask the team to explain what ending each would mean. It may offer a final safety assessment or ask whether limited follow-up is acceptable. Discuss those requests rather than assuming they are required because you have withdrawn, or assuming every contact must stop automatically. Clarify what you agree to and what you decline. The team should distinguish the purpose of a suggested health check from a request to continue collecting research information.
How can you plan the transition in care?
If a study medicine or procedure affects your care, speak with the study clinician and your usual treating clinician about the transition. Ask who will advise on any changes, provide prescriptions if needed and arrange the next clinical appointment. This is a question for the relevant professionals, not an instruction to taper or stop treatment yourself. Request a clear contact if difficulties arise between appointments. Ask what information can be shared with your usual care team and how you can obtain a useful summary, subject to the applicable arrangements.
What happens to data and expenses?
Ask about information already collected separately from future activities. Leaving a study does not automatically mean every record can be erased; the answer depends on applicable rules, the study and the kind of data. Ask the privacy contact to explain your rights and any limits. Request written clarification of completed expenses, reimbursement claims or payment terms rather than assuming all money is lost or owed. The withdrawal discussion should not be replaced by a generic promise about deletion or compensation. Keep the documents relevant to your own arrangements.
What should you confirm before ending contact?
Check who knows about your decision, which activities have ended and whether any agreed appointment remains. Write down the clinical contact, the plan for medicines if relevant and the route for later questions about results or data. You can ask for a plain-language summary of this discussion. If a response is delayed, use the centre’s listed alternative contact. For urgent health concerns, use the appropriate local care service rather than waiting for research administration. The aim is to make your choice clear while leaving the care transition understandable.