by Nancy Ryerson
I first heard about fibromyalgia from a close childhood friend around 10 years ago. She said she felt pain, numbness, and tingling sensations throughout her body, and that doctors couldn’t identify the source. At the time, I felt confident that she would find relief. She was only in her early 20s, and I figured that doctors would be able to suss out her pain’s epicenter and write her the appropriate prescription. It was their job.
Today, my friend still lives with chronic pain from fibromyalgia. She never leaves home without her heating pad. Some days, she has trouble getting up to chase her toddling 2-year-old son. Her colleagues at work have gossiped about her because of how many sick days she takes—though she always gets her work done despite the pain.
I’m not sure if there’s an existing treatment out there that can help her. But I do believe there’s something for her in the pipeline, whether in a research lab or an active clinical trial. And I know that a potential new treatment for her can’t move forward without clinical trial volunteers.
Today, 50 million people in the United States live with chronic pain. For 20 million of them, pain significantly interferes with their day-to-day lives. Many existing treatments have serious side effects, or don’t alleviate pain for everyone. The opioid crisis has further underlined the need for better understanding of the root causes of chronic pain and the most appropriate ways to treat it.
Challenges in finding participants
In order for a new treatment to reach patients, it first has to be approved by the Food and Drug Administration (FDA). Before approving a treatment, the FDA takes a look at data collected from clinical trials about its safety and effectiveness. Most treatments go through three clinical trial phases. Each phase enrolls an increasing number of patients, and lasts for a longer period of time.
Unfortunately, up to 80 percent of clinical trials are delayed or stopped because they don’t have enough participants. New treatments simply can’t reach patients without clinical trial volunteers.
One reason clinical trials struggle to find patients is awareness. Doctors are often short on time, and rarely share clinical trial options for their patients. The responsibility then falls to the patient to find opportunities on their own, but the main repository of clinical trials, ClinicalTrials.gov, doesn’t make that process easy. The website was designed for researchers and doctors, and can be difficult to navigate for those without a medical background.
Matching candidates successfully
Antidote set out to solve the challenge of helping people find a clinical trial by developing a patient-friendly clinical trial matching tool. We’re proud to partner with the U.S. Pain Foundation to offer our tool at uspainfoundation.org/find-clinical-trial.
To use the tool, simply enter your zip code and answer a few questions about your symptoms and treatment background to generate a list of trials you may qualify for in your area. We structure the information about each trial in a way that makes it easy to understand the goal of the trial, how long it will last, who is conducting it, and other key information. If you find a trial you’re interested in, contact information for local sites is included in each listing so you can reach out.
Of course, chronic pain can be exhausting. The thought of making multiple site visits for hours at a time may sound overwhelming. Luckily, not all clinical trials have the same time requirements. Some studies may only require a few visits, or include home visits or a virtual component. A trial may also offer compensation for travel or for your time. Before joining a clinical trial, you’ll have the opportunity to ask any questions you have about the study, during a process called “informed consent.” You can’t enroll in a trial until you sign a form confirming you’ve had all of your questions answered. Even after signing a consent form, you’re still free to leave a clinical trial at any time, for any reason.
It’s also important to note that not all clinical trials lead to FDA-approved medications. Not all clinical trials use a placebo, either. Some measure the effectiveness of a potential treatment against the existing standard of care.
As of this writing, there are 241 studies in the United States looking for volunteers living with chronic pain, 98 studies for headache diseases. Every research project moves our understanding of pain forward, and volunteers are the most important part of that process.
At Antidote, I heard all the time that clinical trial volunteers don’t just participate for themselves—they take part to make the world better for future generations, too. I know that whenever my friend’s son doesn’t feel well, even if it’s just sniffles from the common cold, she thinks about what sickness has meant in her life. She hopes that her son isn’t destined for the same.
Tomorrow’s treatments are in research labs and study sites today. We just have to help them get to the finish line.
Nancy Ryerson is a writer with years of experience in the health care space. She recently became the Senior Marketing Manager at Fern Health, a company pioneering digital care for those with musculoskeletal pain. Prior to Fern, Nancy was Digital Marketing Manager at Antidote, where she managed the company’s content marketing strategy. She also spent three years at The Michael J. Fox Foundation, where she created content for the foundation’s social media audience of more than 700,000 followers. She holds a BA in English and Journalism from NYU.