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January 29.2026
2 Minutes Read

Scleroderma Research: The Essential Role of Patients in Creating Change

For scleroderma research, patients seen as essential co-creators

A New Chapter in Scleroderma Research: The Role of Patient Voices

Advancements in scleroderma research are not merely driven by medical professionals; they are profoundly influenced by the experiences and insights of patients. Two scleroderma patients, Sheri Hicks and Mary Alore, have let their lived experiences elevate the dialogue around managing the chronic illness. Their advocacy bridges the gap between clinical trials and real-world application, where insights from those living with the disease play a crucial role in shaping effective treatment strategies.

The Power of Community Engagement in Clinical Trials

When diagnosed with a chronic illness like scleroderma, the necessity for community support becomes apparent. Alore and Hicks's journey began by expressing their desire to connect not just with healthcare providers but also with fellow patients. This led to the creation of the "Chronic Crusaders" community where people discussed their experiences openly, sharing valuable tips and emotional support.

Transforming Patient Experience into Research Outcomes

Recognizing this potent community engagement, Dr. Susan Murphy from U-M Health sought the involvement of these patients for her research program, RENEW (Resilience-building Energy Management to Enhance Wellbeing). The project utilized a mobile app designed to help those with chronic illnesses track symptoms and make informed health decisions, illustrating how important it is for researchers to incorporate patient feedback to enhance usability and effectiveness.

Valuable Insights from the RENEW Program

The RENEW program’s pilot study showcased how essential peer health coaching is. Participants reported diminished fatigue, enhanced mood, and improved resilience—results mostly attributed to the peer support aspect. This peer-led engagement not only empowered the patients involved but also provided researchers like Dr. Murphy with vital feedback to refine their interventions for better long-term efficacy.

A Bright Future for Scleroderma Patients

As scleroderma organizations report remarkable increases in community involvement and a surge in clinical trials—up by 900% in the last five years—there is palpable hope among patients. The National Scleroderma Foundation’s efforts, as highlighted at the ACR Convergence, symbolize a united front in tackling this complex illness and advancing research initiatives.

Empowering Voices and Creating Change

Patients like Alore and Hicks have demonstrated that by being proactive participants in clinical research, they can advocate for their community effectively. Their stories inspire others to join these initiatives, reminding everyone that their voices matter in shaping future treatments. The commitment of organizations and researchers to include patients as co-creators in health research is essential for creating realistic and efficacious health interventions that truly resonate with human experience.

How You Can Get Involved

Interested individuals looking to join this movement can learn more about participating in scleroderma clinical trials and other initiatives through U-M Health Research. By stepping into the role of empowered patient advocates, individuals can help push the boundaries of what's possible in medical treatment for chronic illnesses.

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