What's involved in participating?

There are many different kinds of research studies. Some are conducted in a laboratory, whilst others are in hospitals or even as simple as online surveys. Before you put yourself forward to participate in research, it is advised to understand and consider the following information before deciding to participate. 

Questions to ask the Researchers

  • What is the main purpose of the research or clinical trial?
  • Where will the study happen? Will it take place in the home or at a hospital?
  • How long will the study last? Several months or even years?
  • How often and at what time will the appointments be and how much time is required for each one?
  • Can appointments be changed at short notice?
  • Will the carer and the person with dementia be separated during the appointments?
  • How do we get to the research centre? At what cost?
  • What happens if the person cannot finish the study?
  • Who will have access to the information from the study? Is the information collected about participants confidential?
  • Can the person continue to see their GP while they are participating in the study?
  • Can medications prescribed by the participant's regular GP continue to be taken?
  • How will participant's safety be monitored?
  • Has the study received approval from the appropriate Ethics Committee?

Questions to ask the researcher if participating in a drug trial 

  • Is it important to take drugs at a set time? Does the researcher need to be told if this does not happen?
  • How will the drugs be administered?
  • Will drugs be difficult to swallow?
  • Is there a possibility that cognitive ability will get worse as a result of the trial?
  • What are the potential risks, benefits and side effects of the drug? (Remember to ask about side effects such as incontinence, sleep disturbances and irritability).
  • What other tests or assessment will be undertaken prior to or during the trials?
  • Who should family members call if the person has side effects?
  • What are the alternative treatments besides the one being tested in the trial?

Your rights as a participant

  • That the research project will be carried out in a manner conforming to the "The Australian clinical trial handbook" (the handbook is available on the Therapeutic Goods Administration website) as well as complying with the appropriate Ethics Committee guidelines.
  • To be fully informed about all the procedures involved in the research and the possible associated risks, discomforts, side effects and inconveniences.
  • To have all identifying information about them kept confidential, unless they have agreed otherwise.
  • That consent is voluntary and the person may withdraw at any time, without having to give an explanation, or refuse to take part in a particular aspect of the research.
  • Not to have future treatment by that doctor or hospital jeopardised by such withdrawal.