Questions to ask about research

The kind of study and the goals of the researchers will determine to a large extent what is expected of participants. However, irrespective of the precise nature of the study, the researchers will have a clear plan of what they want to do, how, when and for how long. This is called the research protocol. These issues should have been discussed with participants and informed consent obtained prior to the start of the study. However, in order to give informed consent, participants must have received and understood all the relevant information linked to the proposed study. It is the researchers’ responsibility to provide such information and to ensure that participants have understood it. Participants are free to ask for further clarification and information, and should be encouraged to do so. The following box contains examples of questions that people might want to consider asking before consenting to take part in research.

Purpose of the research

  • Why is this study/trial being conducted?
  • What do the researchers hope to discover?


  • What is involved (e.g. hospital stays, visits to the doctor, injections, blood tests and scans etc.)?
  • Is any of this likely to be stressful, uncomfortable, burdensome or painful?
  • What is the likelihood that I will receive the experimental drug (in the case of clinical trials)?
  • How long will the study/trial last?
  • Where will I have to go and how often?

Benefits and risks

  • Are there any benefits or risks involved in this study?
  • Am I likely to benefit personally from participating in this study?


  • Will I be provided with support if I have difficulty understanding all the information provided?
  • Will I still be able to participate in research if I am considered unable to provide informed consent?
  • What are my treatment or care options if I decide not to participate in this study?
  • Can I withdraw at any time?
  • Will my wish to withdraw be respected even if I am considered as lacking decision-making capacity at the time?

Continuing care

  • How will participation in this study/trial affect my current care?
  • How will participation in this study/trial affect my future care?


  • What are the likely side effects, if any?
  • What will happen if I experience side effects?
  • What will happen if the researchers notice something abnormal in the information they collect about me that is not directly linked to their study but relevant to my health?
  • If anything goes wrong, would I be covered by some kind of insurance?
  • Who is responsible for the safety and wellbeing of participants?
  • Whom can I contact in case of emergency or if I wish to complain?


  • Who will be informed that I am participating in this study?
  • Who will know whether I am receiving an experimental drug?
  • Will personal information about me be kept on a computer or in a report?
  • Will I have access to information that is collected about me?
  • If so, will my anonymity be respected?
  • Would I be bound to secrecy in any way?
  • How will the results of the study be presented and used?
  • Will anyone see my name and information about me in the reports of the research findings or will it all be anonymous?
  • Will I be informed of the results of the study afterwards?


  • Is there any payment to compensate participants for their time and effort?
  • Are travel costs and other related expenses covered?
  • Does anyone receive compensation of any kind for my participation in the study?


  • Is there anything I should or shouldn’t do during the study?
  • Can I also take authorised drugs for dementia during the study?