This National Clinical Trials Day, the Bateman Horne Center calls for a shift in how we fund and value patient-centered research.

On National Clinical Trials Day, we celebrate the scientific backbone of modern medicine: the clinical trial. But while many people picture trials run by major pharmaceutical companies testing billion-dollar drugs, there’s another kind of research effort quietly transforming patient care—often with fewer resources and far less recognition.

These are investigator-initiated trials, or IITs. IITs are clinical studies designed and led by independent researchers, not pharmaceutical companies, to answer real-world medical questions that directly reflect the needs of patients.

Unlike industry-sponsored studies, which are often focused on securing FDA approval and bringing marketable drugs to pharmacy shelves, IITs start somewhere else entirely: with real patients and real clinical questions. These trials are conceived by frontline researchers and physicians who witness, firsthand, the unmet needs in their communities. For conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID, this kind of research isn’t just important—it’s essential.

When Industry Won’t Invest, Investigator-Led Research Steps In

Many pharmaceutical companies avoid complex, poorly understood conditions like ME/CFS and Long COVID. The reasons are familiar: these illnesses don’t always lend themselves to standardized trial design, they often lack clear biomarkers, and—perhaps most critically—they aren’t viewed as commercially viable. As a result, tens of millions of people worldwide are left with little to no guidance on treatment, grounded in clinical evidence.

That’s where investigator-initiated trials can be transformative. They ask questions the industry doesn’t. They test affordable, existing medications in new ways. They compare treatment options head-to-head, explore models of care, and evaluate strategies for symptom management that make a tangible difference in patients’ daily lives.

Past IITs have led to major breakthroughs in care:

• The ASCOT-LLA trial, an investigator-initiated study, revealed the life-saving benefits of atorvastatin in preventing heart attacks, years before industry-led trials caught up.
• The PEP trial demonstrated that a low-cost, low-dose aspirin regimen could prevent life-threatening blood clots after surgery, thereby changing postoperative protocols worldwide.
• In India, an IIT comparing neck surgery techniques for oral cancer reshaped international treatment guidelines.

These examples underscore the power of non-commercial clinical trials. When research is driven by medical curiosity and community need, not commercial profit, the results can reshape how we care for patients everywhere.

Why the Bateman Horne Center Is Uniquely Positioned to Lead This Work

BHC is one of the few institutions in the world with the expertise, infrastructure, and patient trust to lead meaningful clinical trials in the ME/CFS and Long Covid community. Our research team, led by Dr. Lucinda Bateman and supported by a multidisciplinary group including Dr. Yellman, Dr. Hoppers, Jennifer Bell, FNP, and consulting scientist Dr. Suzanne Vernon, brings deep clinical experience and a long-standing commitment to patient-centered care.

But beyond the people, we have something few others do: a rich, integrated ecosystem of longitudinal patient data and biospecimens.

• Our biobank contains a wide array of samples essential for understanding biomarkers, disease progression, and treatment response.
• Our patient registry captures detailed health records over time, offering rare insight into the lived trajectory of these complex illnesses.
• Our electronic health record (EHR) data enables us to design studies that reflect the real-world diversity of patient experiences.

This unparalleled access allows us to design smarter trials. We can test what actually matters to patients, whether a treatment improves function, reduces brain fog, or lessens post-exertional malaise—not just lab numbers or proxy outcomes.

But We Can’t Do It Without You

Launching these trials requires more than vision and expertise—it requires funding.

To move this critical work forward, we’re seeking funders and partners who believe in a different kind of medical research: one that puts patients first, explores treatments that might otherwise go unstudied, and builds an evidence base for communities that have been overlooked for far too long.

You can help us take the next step.

This National Clinical Trials Day, we’re asking our community—patients, families, advocates, donors—to recognize the role you can play in shaping the future of ME/CFS and Long Covid care. When you invest BHC’s research, you’re not just funding a study, you’re giving voice to millions of people who have waited too long for answers—and helping us build a medical system that listens, learns, and improves.

Partner with us. Let’s take science further—together.