WHAT: The Dupuytren Related Fibrosis Research Group (DRFRG) is an international consortium of physicians, surgeons and scientists working to improve treatment options for Dupuytren disease and related conditions. Dupuytren disease is the most common inherited fibrotic disease, affecting an estimated 10 million Americans and 30 million people worldwide.
HOW: The DRFRG’s strategy is to apply chronic disease research tools to Dupuytren disease:
- Document the natural history.
- Identify biomarkers of early disease.
- Use these to guide further research.
- Develop targeted molecular therapy to prevent progression and recurrence.
WHY: Dupuytren research has refined contracture procedures, but not long-term outcomes. Dupuytren treatments currently follow the model of management by crisis, focused on the end stage of deformity rather than biomarker-guided preventive disease-modifying interventions.
Dupuytren disease is a flagship fibrotic disease but hasn’t been dealt with systematically as such. There is a gulf between Dupuytren caregivers and fibrosis experts – in knowledge, language, perspective, and practical experience. The DRFRG exists to bridge this gap. Lessons learned from Dupuytren research may apply to other fibrotic diseases, but only if lines of communication are organized.
There has been Dupuytren biomarker research: https://dupuytrens.org/dupuytren-literature-circulating-biomarkers/. Unfortunately, few hand surgeons are even aware of these publications, much less able to use them to improve patient care. At the same time, few fibrosis researchers are aware of the opportunities that Dupuytren research offers the fibrosis research community.
WHO: You. Are you a professional interested in Dupuytren or related fibrosis research? Share your experience – even as an occasional advisor. This is an opportunity for you to make a valuable contribution of your unique perspective without a burdensome commitment of your time. Your level of participation is up to you. Engage by email, online surveys, or as a research study investigator.
WHEN: Now. Join the effort now by signing up below.