If you’re about to take part in a clinical trial for the first time, you may not be quite sure about what preparation steps you can take beforehand to make sure your experience goes as smoothly as possible. These tips can help you get ready:
Do your homework.
Researching and learning about as many different aspects of the clinical trial as you can—from the research team to the company sponsoring the trial to safety studies that have been done on the experimental treatment—is one of the best ways to prepare for your experience. You may already have done a good deal of preliminary research when you were first looking into the study, before you were accepted as a participant, but it’s a good idea to use the time before the study begins to gather more information on any issues that you are still not clear about; don’t be afraid to ask the study team to clarify points that you don’t understand. This is also the perfect time to make sure you have all the details you need on the logistical aspects of the trial, like how long it will last, where it will take place, and other key aspects of the day-to-day process.
Know your rights.
Thoroughly understanding your rights as a clinical trial participant is another very important step you should take before the trial begins. This will help you feel more comfortable during the trial and more confident about expressing any concerns that might arise. In a clinical trial, you have the right to understand what risks and benefits you may encounter; the right to get answers to your questions at any time; the right to have your participation kept confidential; the right access to your personal trial data; the right to stop participating in the study at any time; and the right to the highest level of care.
Put together your support network.
Having a network of people who can support and sustain you can be invaluable during a clinical trial, when you may be dealing with such additional challenges as unexpected changes in your health, long travel distances, or uncertainty about the outcome of the trial. Reach out to your family and friends and help them support you during the clinical trial by clearly explaining what you’re doing and why; if they can understand the reasons behind your participation, they will be better able to help you. You should also make sure that anyone involved in your overall health care knows about your participation in the trial and is ready to support you, including your primary care physician and members of patient support or advocacy groups you may belong to.
Make a financial plan.
While participating in the clinical trial itself will not cost anything (experimental treatments in clinical trials are provided free of charge, with costs exclusively assumed by the sponsor of the trial), there may be other associated costs before or during the trial that you will need to plan for. These can include travel costs to get to and from the facility where the study is being held; accommodation and meal costs if the trial is not being held near your home; and funds for childcare, housecleaning, or other household help you may need if you will be away from home or if you will need additional time to recuperate from your participation in the trial. To help put together your budget, talk to the clinical trial coordinator: they will be able to give you a clearer idea of what participation costs you may encounter, and whether any of them will be eligible for reimbursement by the trial’s sponsor.
Depending on whether or not you are taking time off work to participate in the study, you may also need to account for lost income in your financial plan. If the trial does require time away from work without authorization (if you use vacation days, for example), it is entirely up to you whether or not you discuss your participation with your colleagues and employer. Clinical trial participants usually find that people at their work are very understanding and accommodating about the situation. If, however, you feel like your job might be at risk because of your participation, you should seek legal advice right away.
Some clinical trials will involve specific pre-trial instructions, like fasting for a certain amount of time before the trial begins, or drinking water or taking medications at particular times. Be sure you understand and follow all instructions carefully in order to avoid compromising the study.
Take care of yourself.
A clinical trial will often place extra demands on your health, time, and emotions, so make sure you’re taking good care of yourself before the trial begins. Eating healthy food, getting plenty of rest, and spending time with loved ones or doing activities you enjoy can help ensure that you’re in top condition at the start of the trial.