Put simply, this is the Top 10 list of things you must know before you get involved as a participant in a clinical trial. It will help make sure you are fully informed, protected, and have realistic expectations, such that you can make an informed decision about participation.
If you are considering a clinical trial, ALWAYS make sure:
- you understand what the trial is about, why you are being asked to take part and what you will need to do if you do consent to take part;
- you have been informed of and considered the risks and benefits of taking part, and how your rights, data and identity will be protected;
- you are able to comply with the tasks required of you, and can make the time commitment to attend all visits;
- that the study has been approved by a recognised research ethics committee, and you know how to contact them if you have questions or problems with the research/research team (this information should be available in the participant information provided to you prior to consent);
- you understand that it is OK to say no to taking part, that you must consent before a researcher conducts any tests, and that you can ask questions at any time if you have them ;
- you know what reimbursement or out of pocket costs you should expect, and what will happen in the event of unexpected side effects or injury as a result of the trial;
- you understand that the research is being done to find out what works/is safe/is better – so even though there might be hope something ‘new’ will be better, it doesn’t always work out that way.
- that if you agree to take part, you can withdraw at any time, without consequence to your relationship with the research team or ongoing care;
- that you know what will happen at the end of the trial with your ongoing care, and whether you will receive a summary of the trial findings or data;
- you know who to contact if you have questions or need help.
Our Knowledge Centre provides more detailed information, and if you haveve questions, you can always engage in our Facebook Group to ask and share experiences with others. We want to make sure you are well supported in your journey into clinical research, and our online community provides a safe place for that. Or, you can just pick up the phone.