Frequently asked questions : Taking part in a research study
Why do I need a study partner?
Virtually all of the research studies that run at the clinic require a study partner to attend most visits with you.
This person may or may not live with you, but must have a sufficient level of contact to know how you are in yourself and managing on a day-to-day basis. Study partners are a very important part of a process and are asked to read the study information with you and consent to be a part of the process. They help support the research study by answering questions for example about how they think your memory is working and your ability to do daily tasks. They are actively engaged in the program and our experience is that they find this beneficial and interesting.
Does my study partner need to attend every visit?
Your study partner is required to attend the initial study visits, the Screening visit, and then if suitable for the study, the Randomisation visit.
Beyond this point in a study, the requirement for a study partner to attend will be explained by our research team and varies from study to study.
Do studies involve taking medication?
Typically, yes. Most of our studies evaluate a potential new medication compared to a placebo. This could be a tablet, a patch, a spray, injection, or infusion. Some participants will receive the active study medication and some the dummy medication (placebo). The research team do not know whether a study subject is receiving the active medication or the placebo. They are blinded to this as indeed is the participant.
Our research team will fully explain how the medication is administered and how often it is taken. Occasionally, there may be an “Observational” study running that does not require the administration of medication.
Are there side effects of study medication?
It is fair to say that most prescribed medications have some recorded side effects and a good example of this is aspirin. Study medications can have side effects and the study information provided will explain this in detail.
Our experienced research team are happy to discuss any questions you may have in relation to this.
How many visits will I need to make to the clinic during the course of a study?
This will depend on the study you are taking part in. There is an initial screening visit and if the initial assessments suggest you may be suitable for the study, there will likely be further screening tests such as brain scans.
Once all of the screening information has been gathered, our research team will inform you if you are eligible to enter the study. If you are eligible, you will attend a “Randomisation” visit when the study medication will be administered. The term “Randomisation” is used to describe the process that randomly allocates the active medication or placebo to a study participant. Subsequent visits might occur every 2-4 weeks, monthly or 3 monthly, and our research team will explain this and book your appointments.
How long do research studies typically run for?
Some studies are short, for example, 3-6 months. Other programs can run for 1-4 years. Because there is now great interest in identifying Alzheimer’s at the earliest opportunity, the research studies are designed to run for longer periods to help measure the gradual changes in memory that occur early in the disease process.
This means that a participant is carefully evaluated over quite a long period of time and most study participants find this helpful and reassuring.
What kinds of tests are involved in a research study?
Our research team will conduct memory tests and tests to evaluate daily activities. Blood tests, heart tracings (ECG), MRI brain scans also form part of the screening assessments.
Highly specialised PET scans are also used and can detect the abnormal Amyloid and Tau proteins that build up in Alzheimer’s disease and they may be offered as part of the study.
Measuring Amyloid and Tau proteins in the spinal fluid (CSF) is also now widely used in Alzheimer’s research and is obtained by lumbar puncture which is part of some research studies.
Will I get paid for taking part?
Our studies are on a voluntary basis and there is no payment to take part in our research. However, we will reimburse any out-of-pocket expenses you may have e.g. travel costs, and provide you with tea, coffee, and lunch during your visits.
Some studies will provide a small stipend in recognition of the time and inconvenience to attend study visits and our research team can advise you on this.