You’ve agreed to participate in a clinical trial. The reasons for doing so vary — from seeking treatment for a current medical condition to helping doctors to understand the science of genetics and heredity to wanting to take preventative steps for conditions like heart disease. No matter why you’re doing it, your first question is likely this: what do I do now?
What to expect
The organization conducting the trial will likely require certain things from its participants. That may include your time, your health information, your commitment to consistency, and more. You’re willing to provide all that is required of you, while still living your life. What can you do to make it all work?
Your checklist
Keep a Medical Journal: Your care team will always be on top of recording things like appointments, lab results, procedures, medicines and dosages. You can keep a personal record of everything you experience during your trial — things like reactions, side effects, symptoms, your diet and meal schedule, activities and exercise, your mood, and a list of running questions. Having a written (or digital) record of what you’re going through will help to keep you on schedule and chart the patterns of your health.
Rally Your Support: Things can sometimes change quickly on a clinical trial — a lab result can lead to additional appointments or side effects like fatigue can take more of a toll than expected. It’s important to have social support both for emotional wellness and for help with logistical issues that may arise. Many participants have found that partnering with someone you trust to support you is helpful.
Talk to Your Employer: You are not required to inform your employer of your involvement in a clinical trial, and many people are able to use vacation days to complete their trials. But if you’ll need time off or have to adjust your work schedule for your trial obligations, it will be smart to discuss it with your employer beforehand. Once you get the trial schedule, you can discuss the start and end dates, frequency of absences, and possibly your reasoning for participating in the trial. You should also get to know your employer’s sick leave policy to determine your pay status and leave availability.
Plan for Travel and Lodging: If your trial will take you out of town, or even if you’ll need to travel locally, it’s important that you talk to the trial staff about these costs before you commit to participating. Figure out what compensation will be available and confirm that it’s correctly explained to you by your care team. Once you start the trial, keep all receipts that you can submit for reimbursement.
Arrange for Childcare and Pet Care: Even if you can coordinate your trial schedule without missing work, you will have to be away from your home for stretches that are prime time for childcare or dog walking. Once your trial starts, you will be expected to make all of your appointments, so finding reliable care will be essential. The good news is, your trial schedule should give you enough lead time to book reliable care. You should also ask your trial administrator if any of these costs can be reimbursed.
These are just some of the preparations that will help you stay on track with your clinical trial and will also help your peace of mind through this intense but rewarding process.
This blog is intended to be informational in nature. The information and other content provided in this blog, or in any linked materials, are not intended and should not be construed as medical advice, nor is the information a substitute for professional medical expertise or treatment.
If you have any questions or concerns, please talk to your doctor. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.
