By Rebecca McKinsey

Lindsey Wahlstrom and her daughter, Rona Edwards, during one of the clinical trials they participated in together.

Rona Edwards—whose mom describes her as “a light and an absolute joy bomb”—had a foolproof method for making new friends: Compliment their shoes.

She made videos for other kids, teaching them about chemical reactions and other scientific marvels, and sharing her experiences in the hospital to help other young patients feel less alone.

When she died two weeks after her sixth birthday in 2023 from complications of treatment for acquired aplastic anemia, a rare autoimmune form of bone marrow failure, she was still teaching those around her—including the researchers and physicians who had fought to save her life.

“They learned things from her that they’re now implementing into practice, as part of her legacy,” says Lindsey Wahlstrom, Rona’s mom. She and Rona’s father enrolled in several clinical trials with their daughter to donate their stem cells and, later, immune system-boosting T cells to her as part of her treatment.

Wahlstrom is an industry professional with experience in patient recruitment and engagement across hundreds of clinical trials—and has been a participant herself in several. Her daughter’s experiences motivated her to co-found Rona’s FUN LAB, named after the science videos Rona once created. The organization advocates for stronger incorporation of quality of life and mental health into the treatment of critically ill children.

She also continues to push for greater participation in clinical research by patients of all ages. Even in the worst-case scenarios, when the treatment doesn’t work or the participant doesn’t survive, being part of research can still bring peace of mind.

“You can rest in the fact that you got the best care,” Wahlstrom shares. “I have not had a period of what-ifs. For me, that brings an unbelievable amount of comfort, that we left no stone unturned.”

Discovering clinical trials

Lack of widespread participation in pain-related clinical trials—the studies designed to evaluate a potential new pain therapy—often begins with limited awareness. According to the U.S. Pain Foundation’s 2025 The Pain Experience survey, which includes insights from more than 2,400 individuals nationwide, 70% of adults with pain were unaware that clinical trials existed for chronic pain, and 74% of families of youth with pain had never been approached about enrolling in one.

There are many ways to learn about clinical trials, including:

—Patient advocacy groups

—Communities for specific pain conditions

—Advertisements

—Patient registries

—Clinical trial databases such as clinicaltrials.gov

—Your health care provider

—Local clinics or pain management centers

Steps to take before enrolling

After you identify a trial, contact the study team (the principal investigator or research coordinator) to complete a pre-screening and determine if you could be a candidate for the study, shares Toluwalope Junaid, MD, PhD, executive medical director at biopharmaceutical solutions company Syneos Health.

If you appear eligible, you’ll receive an “informed consent” document explaining what is being studied, what participation involves (visits, tests, time commitment), and potential benefits and risks. Review it with your health care provider(s) to decide if it’s a good fit, and to check any potential interactions with current or future medications, Junaid says.

Discuss the opportunity with anyone in your life who may be affected, she adds. Some studies may place temporary restrictions on activities such as driving. Many exclude individuals who are pregnant or breastfeeding, and some require contraception for participants and/or their partners.

If you need support to understand the materials, ask for it. “Informed consent isn’t a form; it’s a process,” Wahlstrom says. “Take the time to understand. Err on the side of being annoying—everyone would rather you ask questions.”

You can request translation services or have someone from the study team walk you through the informed consent, she notes. Studies involving children or individuals with limited cognitive capacity also incorporate an accompanying “assent” process. This includes an age- or ability-appropriate explanation of the study to ensure the participant understands what to expect and agrees to take part, in addition to obtaining formal consent from a parent or guardian.

Navigating a trial

After signing the informed consent, you’ll usually complete lab work, scans, or questionnaires to establish your baseline. Study staff will explain how to take or use the experimental medication or device, how to track symptoms or side effects, and when you’ll need to attend in-person or virtual appointments.

Your privacy will be protected: Studies generally identify participants in documentation using a unique study ID rather than their name, Junaid shares.

Since most traditional trials require travel to a research site, Wahlstrom encourages participants to ask about financial assistance for travel or meals. Many studies set aside funds for those needs. But participating can have more than a financial cost.

“We’ve seen location deterring patients from participating in a study, especially pain studies,” Junaid says. “Many times, if the patient has to move or travel, their pain intensity could have changed by the time they get to the research site”—which not only makes participation harder, but can impact the study’s results.

To help, more trials now use decentralized models, with phone or video visits and digital tools, or hybrid formats that combine both in-person and remote participation.

Speak up and ask for support on difficult days, Wahlstrom urges. “You’re donating your time, energy, and the treatment of your body to the research. There’s significant value to what you’re doing,” she says. “Don’t be afraid to take up a little bit more space than you might be used to taking in the health care system.”

And remember: You can stop at any time.

“Just because you’ve consented to do the study does not mean you must finish the study,” Junaid stresses. “If at any time you’re no longer interested, you’re allowed to withdraw consent, for any reason.”

Assigned treatments and pain management

In most clinical trials, participants are randomly assigned to receive either the experimental therapeutic, the current standard of care (the best treatment already available), or a placebo (a treatment with no therapeutic value). Some trials also require participants to stop taking their usual pain medications or over-the-counter medicines.

Understandably, these requirements can feel discouraging. What if you’re asked to stop your current pain medications and end up on placebo—leaving you with limited or no pain relief?

To address this concern, many pain-related clinical trials provide all participants with a “rescue medication”—an analgesic painkiller available in addition to the treatment being studied, Junaid explains. If the trial therapeutic does not provide enough pain relief at times, participants can take the rescue medication, simply noting when and how often it’s used.

If pain remains unmanageable, the safest option may be to leave the study and return to their previous pain-management plan.

“Nobody wants to be in pain, and we don’t want to leave patients in pain,” Junaid says.

Keeping the right mindset

Entering a trial requires a realistic outlook: There are risks, and your pain may not improve, Junaid notes.

“This is research—there’s no guarantee the drug will work, or that it will be safe,” she emphasizes. “We’re trying to see if it will, but we don’t have a guarantee yet.”

Still, Junaid and Wahlstrom stress that participation in clinical trials has a broader impact: contributing data, answering critical questions, and paving the way for better pain care—if not immediately, then in the future.

“Sometimes, participants in a study may not get a direct benefit,” Junaid says, cautioning participants to manage expectations. “But they are helping patients globally who are looking for answers.”

Wahlstrom encourages patients to at least explore the possibility of participating in trials—and to consider doing so before exhausting other options.

“The reality is, the first person cured of any condition will be in a clinical trial,” she says. “The first person to get noticeable pain improvements in their condition will be in a clinical trial. Don’t let fear of the unknown stop you from something that might benefit you.”

For Wahlstrom, the cause is deeply personal. When she speaks about equitable, patient-centered care, she thinks of Rona and all her daughter taught to those around her.

“I feel like she came and she accomplished her mission,” she says. “I miss her every day, but I hope to help carry that mission forward. Research is a part of that.”