Why are hand surgeons still the primary caregivers of this chronic progressive systemic disease? Dupuytren disease is the most common inherited condition to affect the connective tissues. It’s a medical condition. Of the connective tissues. It is not cured by any known procedure. Procedures provide engaging technical challenges but disappointing long term outcomes. Historically, physicians have only treated Dupuytren contracture, never Dupuytren disease. Isn’t it time for this to change?
What really is the biology? Why do some people have intractable difficulties with Dupuytren contracture, and others only minimal signs of Dupuytren disease? Is it one disease or a common path where several mechanisms converge? Is it always familial? What role do epigenetics play? Is it active or reactive? Why does it seem to start and stop in some people? Is contracture progression an active or passive process? Is Peyronie disease directly related or is there simply demographic overlap? Are there unique biomarkers? What lifestyles, situations or medications favorably influence clinical progression of Dupuytren disease?
What needs to be done to find a cure? The Dupuytren Foundation is using an innovative research model of crowd-sourced medical data mining. Why? Thousands of surgeons across the country treat Dupuytren disease, making it difficult to conduct a practice-based study of a large number of Dupuytren patients, a quality issue because disease severity varies greatly. The Foundation’s International Dupuytren Data Bank (IDDB) will analyze clinical data, DNA and biomarkers from a much larger number of Dupuytren patients than has been previously possible. By engaging patients directly online, the IDDB has cost savings, scalability, standardization, and simplicity compared to traditional research using physician records. This also provides flexibility for the IDDB to survey issues not normally part of a patient’s medical record, to follow patients longitudinally, independent of treatment or treating physician.
How can you get involved? Simple. Contact the Dupuytren Foundation directly info@Dupuytrens.org, or call: 949-287-3387.