Basket | Login | Register

 
 
 
 

Questions to ask about research

Participating in 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. For clinical trials, this is called the 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 but participants are free to ask for further clarification and information. The following box contains examples of questions that people might want to consider asking before consenting to take part in research studies or clinical trials.

Topic/issue

Typical questions

Purpose of the research

Why is this study/trial being conducted?

What do the researchers hope to discover?

Procedure

What is involved (e.g. hospital stays, visits to 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/trial?

Am I likely to personally benefit from participating in this study/trial?

Consent

What are my treatment or care options if I decide not to participate in this study/trial?

Can I withdraw at any time?

Will my wish to withdraw be respected even if I am considered as lacking 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?

Safety

What are the likely side effects?

What will happen if I suffer side effects?

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?

Confidentiality

Who will be informed that I am participating in this study/trial?

Who will know whether I am receiving the experimental drug?

Will personal information about me be kept on a computer or in a report?

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 I be informed of the results of the study afterwards?

Payment

Is there any payment to compensate participants for their time?

Are travel costs and other related expenses covered?

Does anyone receive compensation of any kind for my participation in the study/trial?

Restrictions

Is there anything I should or shouldn’t do during the study/trial?

Can I also take authorised drugs for dementia during the study/trial?

 

 
 

Last Updated: Friday 21 August 2009

 

 
 

Options