IDDB DUPUYTREN HEALTH CARE PROVIDERS

The Dupuytren Research Group International Dupuytren Data Bank (IDDB) is an independent research study designed to overcome obstacles which have blocked progress toward a cure for Dupuytren disease and related conditions.

The target for a cure is the biology of early Dupuytren disease. Dupuytren contracture is the end result of this biology – the crime scene, not the criminal. Current procedure-based, contracture-driven treatment has progressed little since the 1800s in terms of long-term outcomes and recurrence. Dupuytren contracture may appear to be a surgical problem, but Dupuytren disease is not. Nearly 200 years of experience have shown that Dupuytren disease is not cured by any known local procedure. It’s time to make progress to a cure.

Because Dupuytren is a chronic progressive connective tissue disease, progress toward a cure requires the tools of chronic disease research, which are incorporated in the architecture of the IDDB:

• Document the natural history of early Dupuytren disease.
  (Preventive treatments cannot be studied without this)
  (Surgical patient records cannot provide this information)
• Identify biomarkers to define different disease subsets.
  (Knowledge of natural history is needed to do this)
  (It’s only unpredictable in that we need to quantify disease subsets)
• Identify molecular targets to develop biobiomarker-guidedeventative treatments.
  (Circulating factors which cause disease, not biopsy findings from disease)
  
  

Because it is a genetic, slowly progressive disease without a known biomarker, genetic research tools require analysis of thousands of patients. This scale exceeds the capability of multicenter surgical registry research models. This is the reason that the IDDB is organized as a direct-to-patient study: it’s the only way to collect the needed data in a timely, cost-effective way.