LIMBWatch Series: Dr. Jared Adams MD,PhD : Your Story Could Save a Limb: Inside the New Diabetic Foot Ulcer Patient Registry STEADY
Your Story Could Save a Limb: Inside the New Diabetic Foot Ulcer Patient Registry What if the most important piece of diabetic foot ulcer research isn’t another clinical endpoint—but the patient’s story? In this special episode of LIMBWatch, Dr. G sits down with Dr. Jared Adams, Senior Vice President of Global Medical Affairs, Digital, and Technology at Alira Health, to explore a powerful new approach to diabetic foot ulcer research: building a patient-centered registry that follows the real-world story of people living with DFUs. A diabetic foot ulcer is never “just a wound.” It can affect mobility, employment, sleep, mental health, independence, finances, transportation, family members, and the ability to access care. Yet many of those experiences never make it into the medical record. Dr. Adams explains why registries can fill that gap by connecting patient-reported experiences, clinical information, wound images, healthcare records, and eventually claims data to create a much more complete picture of what actually happens to people living with DFUs. Together, Dr. G and Dr. Adams discuss why clinical trials and real-world evidence serve different purposes, why the patients seen in everyday practice often look very different from carefully selected clinical-trial populations, and how understanding the entire pathway of care may help identify opportunities to intervene before a patient reaches hospitalization, recurrence, or amputation. One of the most powerful themes of the conversation is co-design. Patients aren’t simply being asked to participate in research—they are being invited to help determine what the research should ask in the first place. The registry team is currently conducting remote, compensated one-hour interviews with people living with diabetic foot ulcers to learn what researchers may be missing. Participants can share everything from how their ulcer began and how their care was coordinated—or fragmented—to the emotional, financial, and practical realities that don’t appear in a wound measurement. And compensation matters. As Dr. Adams explains, patients are being compensated because lived experience is expertise. Their time, knowledge, and experiences have value. These interviews are separate from enrollment in the registry itself. The goal is to listen first, learn from patients, and use those insights to help build a registry capable of following thousands of people over many years. The conversation also explores the potential of smartphones, AI, remote monitoring, and patient-generated data to become part of the future wound-care toolkit—but with an important reminder: technology cannot replace the human being in the loop. Perhaps the most important message of the episode is this: Every toe has a story. And behind every wound is a person. If we can capture those stories, connect them to clinical evidence, and understand the pathways that lead toward healing—or toward limb loss—we may be able to move from simply treating diabetic foot ulcers to truly understanding them. From surveillance before salvage to fragmentation of care, insurance barriers, patient-reported outcomes, quality of life, limb preservation, and the future of real-world evidence, this episode asks a fundamental question: What could happen if we finally started measuring what matters most to the people living with diabetic foot ulcers? If you or someone you know is living with a diabetic foot ulcer and would like to learn more about participating in the patient interviews, visit STEADY DFU Patient Registry Your story may reveal the question researchers didn’t know they needed to ask. Your voice matters. And it could help change what happens to the next patient. Correction: The episode incorrectly stated that US citizenship is required for participation in STEADY. US residency is required, but US citizenship is not required. Citizenship status is not asked or checked. All adult US residents with at least one active diabetic foot ulcer are encouraged to participate.
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