We have a lot to be grateful for right now, including something that’s a pretty big deal. The most advanced Dupuytren research ever has moved from dream to reality – the International Dupuytren Data Bank.
It is a big deal. Dupuytren disease is overlooked. Dupuytren patients are underserved. Dupuytren isn’t a common word, but it’s a common problem. Since the year 2000, the percent of Americans affected by Dupuytren disease has increased to over 9 percent of the overall population. That’s almost one out of ten facing the possibility of being crippled by Dupuytren disease.
New treatments – needle aponeurotomy, Xiaflex/Xiapex – are alternatives to invasive surgery, but don’t change the big picture. All Dupuytren procedures only treat the effect, not the cause. That’s why they’re often a temporary fix. Patching up the hand every few years isn’t a cure – it’s damage control. Dupuytren disease is a medical condition which needs a medicine. Until there is a medicine, damage control will be the only option for you, your family, grandchildren, their children, long after we are gone.
Here’s the good news: We’re breaking from the past, moving forward, finally using the right tools to solve the Dupuytren puzzle. This is happening right now. The International Dupuytren Data Bank is recruiting Dupuytren patients online and currently has over 1700 enrollees. We plan to begin biomarker testing on this group in 2017, initially selecting those with severe disease. This is all possible because of financial support from the global Dupuytren community: doctors, patients, and advocates.
We’ve been busy in the last 12 months. The International Dupuytren Data Bank launched. An international team of leading Dupuytren scientists joined our Research Committee. Thousands of people received Dupuytren awareness brochures. Volunteers logged more than 20,000 hours of work. Social media was expanded. Our central office has better patient support capability and better research data resources.
Our most important work is research to find a Dupuytren biomarker. Biomarkers have revolutionized chronic medical disease research. They are the key to a Dupuytren cure. However, testing for Dupuytren biomarkers is costly because these aren’t standard lab tests procedure. The initial cost per person for biomarker testing will be high, but as we refine the list, each round of testing will be less expensive per person. This is the fastest and most cost-effective way to find a cure for Dupuytren Disease.
Dupuytren is a disease affecting millions of people and has no known cure. Your contribution supports the only organization devoted entirely to finding a cure for Dupuytren disease and related conditions. All of our officers are volunteers. All are donors, including me. Please consider charitable giving this year to help improve the lives of the millions of families affected by this crippling disease.
Thanks, and enjoy the spirit of the season!
Charles Eaton MD