7 Things to Help You Prepare for a Clinical Trial

You're ready to explore the world of clinical trials! I have come up with what I think are the top 7 things to keep in mind as you prepare and move through the clinical trial process.

1. Talk to your doctor about clinical trials

Now you're ready to talk to the doctor about clinical trials. At first, your doctor may present only one trial that is available, or the doctor may offer several clinical trial options to you. Make sure to ask as many questions as you can think of while your doctor is reviewing your clinical trial options. What I did before any decision was made is I took the clinical trial information home and read through the entire protocols. Also, writing down questions for my next visit and even placing a call to the doctor to discuss trial options, one vs. the other and what was the long-term goal of the clinical trial.

2. Meeting with a protocol nurse

You and your doctor have decided on the right clinical trial for you. The next step will be to meet with a protocol nurse who will review the clinical trial consent with you in depth. The protocol nurse will read each section of the clinical trial consent to you making sure you have a clear understanding of the clinical trial, risks, and desired outcome and allowing you to ask additional questions if you need to.

3. Ask about travel arrangements

During the time with the protocol nurse, make sure to ask about travel arrangements. Some of the clinical trials will require more travel than others. I participate in a clinical trial that needs me to visit the hospital once a week. Make sure you can commit the time as it will be crucial to the success of the trial. Also, ask about parking, lodging, and meals for yourself and your caregiver, or if you have children and need to travel with, them make sure to ask if that cost will be covered as well.

4. Ask about the medication(s)

Also, make sure to discuss the medication or medications you will be receiving during your clinical trial. The drug offered by the clinical trial sponsor is generally covered since you are partaking in the trial. However, if you are participating in a trial that provides a combination of drugs make sure the second drug is covered or is prior approval needed from the insurance company? There are ways to obtain medications from the pharmaceutical companies directly if needed. The clinical pharmacist should talk to you about that option, but if not make sure to ask.

5. Pre-trial workups

The pre-work up, depending on the type of clinical trial, you may be required to have several tests before the clinical trial begins to ensure you are healthy enough to go through the trial. You want to make sure you attend each test and procedure, ensure you are staying hydrated as some of the pre-trial workups may involve lots of blood work.

6. Keep track of your schedule and ask questions

Once you get the official notice that you have been cleared for the clinical trial, continue to ask questions. Make sure your protocol nurse provides you a schedule of when you are supposed to be at the hospital to receive treatment. If you are taking an oral medication, make sure the protocol nurse provides you with a journal to keep track of when you take your medicine and continue to ask questions. One thing I cannot stress enough is if you have a question about the clinical trial, medication, side effect or risks, ask the questions and discuss with your doctor and protocol nurse.

7. Receiving treatment

On the day the trial begins you might have blood work done, see the doctor and protocol nurse and then head to the treatment center. This is how it went for me. I had my blood work done first, and then met with my doctor and protocol nurse to review blood work, answer any questions, and then off I went to the treatment room to receive my IV therapy. If you are only receiving an oral medication, the going to the treatment room may not be necessary.

Keep in mind while clinical trials may be scary, your medical team is going to ensure your safety. Clinical trials have extra protocols in place to ensure the safety of the patient. If you're curious, just ask your doctor and protocol nurse and they will explain the additional safety precautions in place to ensure your safety. Also, remember as you participate in the clinical trial you are helping to have a treatment option approved by the FDA that are not available yet. These seven steps definitely helped me as I prepared, and I hope they help you as well.

Editor’s Note: With heavy hearts, we regret to inform readers that on February 27, 2021, Curtis passed away from stage IV bladder cancer. Curtis’s advocacy efforts and writing continue to impact many. He will be deeply missed.