What changes, and when?
This clarifies what “last planned visit” means. It does not establish that treatment or follow-up ends on that date. Alex can ask the study team which change is being discussed.
Questions to keep
Before the trial ends.
Make the next question clear.
A free conversation guide for people taking part in research, and those supporting them.
Start with the change being discussed
A last planned visit, the end of treatment and the end of follow-up are different events. A useful conversation begins by finding out which change is being discussed.
Choose the questions that matter to you. Ask your study team to explain unfamiliar words and provide information in a format you can use. This guide helps prepare that conversation. It does not tell you which treatment to choose, replace information for your study or promise continued access. Your study team and treating clinician can explain your own arrangements.
What changes, and when?
Ask whether the change concerns visits, treatment, follow-up or the whole study. Ask for the dates that apply to your study.
Who will explain and arrange the next steps?
Ask the study team who can explain the arrangements and whom to contact if that person is unavailable.
What has been agreed, and when will I hear back?
Ask for the next agreed action, the person or team taking it, and the date for the action or next update.
Watch the questions take shape
A 68-second silent explainer. It starts only when you choose Play. All information is available in the transcript and reading guide.
Paused. No audio or automatic playback.
Complete transcript and visual notes
What changes when part of a trial ends? The answer may involve visits, treatment, follow-up or the whole study. This question kit offers three starting points for a conversation with your study team. What changes for me, and when? Who is responsible for explaining and arranging what happens next? What is the next agreed action, who will take it, and when will I hear back? Ask for unfamiliar words to be explained. Write down what is known and what remains uncertain. Check that you have understood. The kit does not promise access or replace your study information. Keep your notes yourself. Your study team and treating clinician can explain your own arrangements.
Also shown: visits, treatment, follow-up and whole study; three question numbers; blank action, who and next-update lines. Do not send IAE medical records or personal case details. General information, not treatment advice.
Download the transcript (text)
English silent web edition, 1 October 2026, based on the original 28 September question-kit source. This is not a narrated or local-language edition.
Try the question with Alex
An original fictional learning example. No real person, programme, receiving decision or treatment arrangement is represented.
Alex has been told that the next study visit will be the last planned visit. Alex does not know who will explain the next steps. We have no other information about Alex.
Explore a question to see what it can clarify. These choices do not determine Alex’s treatment or establish that any arrangement exists.
Who will explain and arrange the next steps?
This addresses the gap stated in the example: Alex does not know who will explain the next steps. Alex can ask the study team for the responsible contact and a backup.
What has been agreed, and when will I hear back?
This makes a future answer usable. The example gives no agreed action or date; those need to be confirmed with the study team, not filled in by this guide.
All three question explanations are shown.
A conversation note to keep yourself
Use the prompts below on paper or in your own document. This website has no field for your answers.
- My most important question.
- What the team explained.
- What is still uncertain.
- The agreed action and person or team taking it.
- The date for the action or next update.
- The contact and backup contact supplied by the team.
Check the explanation in your own words: “My understanding is ____. The next step is ____. Is that right?”
Keep your completed note yourself. Do not send IAE medical records, participant identifiers or personal case details. For your own treatment or a health concern, use the contacts supplied by your study team and treating clinician.
Download an editable conversation note (text)
About this resource
Adapted from IAE’s original “Before the trial ends: three questions” source edition of 28 September 2026. Public English web edition: 1 October 2026. The Alex example remains fictional. This edition has not been tested with research participants; no contributor endorsement or clinical validation is claimed.
Ask about the resource without sharing personal case details