You may have many questions when deciding whether or not to join a study, particularly if it is a clinical trial.
Learn more about:
- Will I be better off in a study?
- How long will a study last?
- Can I be involved in more than one study?
- Is participation free?
- Will I be paid?
- Can I have other treatment?
There are many advantages of being involved in research or a clinical trial. Depending on the study, these may include:
- accessing programs, medicines or other treatments that are not available outside of the study and may be better than the current standard treatment for the disease
- accessing expensive drugs that are not currently covered by the Pharmaceutical Benefits Scheme (PBS)
- seeing your treatment team, including specialists, more often
- taking an active part in your health care
- learning new ways to improve your lifestyle
- improving your quality of life
- feeling that you’ve tried all treatment possibilities
- knowing you’ve made a valuable contribution to helping others in the future.
Joining a study doesn’t always mean you will be better off than before or compared to other people in a similar situation. This is because, although researchers may predict that the outcomes of their study will be positive overall, not everyone will respond in the way that they hope.
In a clinical trial, you may be in the control arm and not given the experimental treatment. If this is the case, you will receive the current standard treatment, and be monitored more frequently and closely than usual. Either way, your doctor and the clinical trials or research nurse will discuss the possible advantages and disadvantages for you before you join a study.
From start to finish, a study may take several months, years or even, in some cases, decades. However, you may only need to be involved for some of this time. It may be a one-off couple of hours, or you may need to give a bit of time every few weeks, months or years.
Some studies require people to be surveyed at regular intervals for several months or years. This allows researchers to understand the long-term effects of treatments, monitor the general health of study participants, and collect data about long-term survival.
Studies have what is known as a recruitment phase. This usually occurs over a few months or years until the required number of people have agreed to take part. The study is then closed to new recruits.
Once the study is over, there may be a follow-up phase. People may be followed up at set intervals for months or years after their treatment is over. Make sure you ask how long you need to be involved for.
The participant information and consent form will set out the expected time frame.
You may be interested in joining multiple studies. Check with the contact officers of each study whether you can participate in more than one study at the same time. If you can, think about whether you’ll be able to commit to all their requirements. It is not usually possible to join more than one clinical trial at a time.
The cost of trial-related treatment, tests and check-ups will be paid for by the organisation that is funding or conducting the research. You will still have to pay for any treatments or tests you have as part of your standard care. The participant information statement will outline any costs.
People participating in cancer research and trials don’t usually receive payment. It is not acceptable for researchers to offer participants money to encourage them to join a clinical trial. Out-of- pocket costs (e.g. travel or parking) may be refunded. The participant information statement will outline any payments.
Check whether the study will have an impact on any other treatment you’re having or planning to have. This includes medicines for symptoms or side effects of cancer or other conditions, or complementary therapies such as herbal or nutritional supplements or massage.
Ask your doctor if you need to stop or delay these other treatments, or whether they need to be modified (for example, by changing the dose).
|It is important to let your doctor know about any other medicines or supplements you are taking, as they can interact with the experimental treatment and cause harmful side effects.|