DUPUYTREN RESEARCH GROUP INC
1850 Forest Hill Blvd, West Palm Beach, FL 33406 dupuytrens.org

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Organizations Filed Purposes: Our goal is to conduct innovative research and global education to improve the ability to diagnose, predict, and prevent complications of Dupuytren disease and its treatment.

We are the global front line of research to find a cure for Dupuytren disease, which cripples millions of hands. The biggest obstacle to Dupuytren research is lack of a diagnostic blood test. Our International Dupuytren Data Bank research project is using crowdsourcing, data mining, and advanced systems biology tools to develop a Dupuytren blood test.

Research: International Dupuytren Data Bank (IDDB). The lack of a disease biomarker and the lack of documentation of the natural history of Dupuytren disease are barriers to progress toward a Dupuytren cure. The IDDB is a unique research project designed to create these critical resources in a rapid, cost-efficient way. The IDDB has two components, survey and biomarker collection. The survey component is a secure, HIPAA-compliant online form to gather demographic, general medical, and Dupuytren-specific patient-reported data as well as individual trends over time. The survey has averaged 100 new enrollees per month since it went live in Nov 2015. Survey hosting and database administration is provided by the Arthritis Research Center Foundation, an independent organization. Biomarker collection is under development with input from the Dupuytren Research Group Research Committee, which includes Dupuytren Research thought leaders from five countries. Dupuytren biology is complex, and the DRG approach to biomarker identification has evolved from simple gene testing to multiple biomarker testing to a systems biology approach using computational biology. Tests for some candidate biomarkers are costly and present difficult logistics. Our commitment to remain cost-effective means that biomarker testing will not commence until we have the best available predictions for research ROI for each test. We continue to engage a growing group of international scientists to provide guidance for optimum Dupuytren biomarker study. This program is in its first stages (survey only). As it develops and transitions to biomarker analysis, expenses will increase with a projected $7,000,000 budget for the five year period beginning with biospecimen collection. The value of this program will be to establish a laboratory test to provide individualized treatment guidelines, outcome prediction and most important, a platform to develop and test new preventive medical treatment of Dupuytren disease.Research: Topography. The Dupuytren Topography research study is a retrospective chart review of over 2300 previously untreated Dupuytren patients treated by Dr. Eaton. Data includes medical history, Dupuytren-related history, detailed examination findings and measurements before and after treatment. This is a unique data set, unlikely to be repeated in size or complexity. The goal of this project is to find correlations between medical risk factors, topographic patterns of Dupuytren disease in the palm, and treatment outcome. This project is labor intensive, using custom data entry forms developed to manually convert handwritten paper patient record and diagram scans into machine-readable data. Preliminary analysis has begun, and data entry is still underway. The value of this program is to better understand the natural history and subcategories of Dupuytren disease to improve clinical decision making and personalized treatment recommendations.Research: Literature archives. Publications on Dupuytren disease exist in hundreds of different journals and textbooks, many which are out of print and many of which are not available in all medical libraries. The Dupuytren Research Group literature archive is the largest searchable full-text archive of Dupuytren-related academic publications in existence. This includes over 3000 unique publications dating back 200 years. Most of these resources are not available online. Many represent out of print resources scanned and converted to a machine-readable text by the Dupuytren Research Group. These archives are regularly updated and available to interested Dupuytren researchers.The value of this program is a unique Dupuytren knowledge resource created by the DRG and made available at no cost to Dupuytren researchers worldwide.

Education: Academic presentations. Physician DRG directors regularly give presentations on Dupuytren disease at regional, national and international academic conferences. These are funded by the directors.The value of this program is to raise awareness in physicians and therapists regarding the need for Dupuytren research and the need for their patients to enroll in research.Education: Academic conferences and publications. DRG has an integral role in organizing international conferences on Dupuytren disease. Our conferences are on a five-year cycle: 2010 Miami, FL; 2015 Groningen, The Netherlands; 2020 London, Ontario: http://DupuytrenSymposium.com. These conferences are followed by textbook publications: Dupuytren Disease and Related Hyperproliferative Disorders (2012); Dupuytren Disease and Related Diseases.Education: Website content / videos. DRG produces and freely distributes a variety of Dupuytren educational resources through its website Dupuytrens.org. These include Frequently Asked Questions, blog discussions, image galleries and videos. Dupuytren.tv, the DRG YouTube channel, provides over 100 educational videos for both lay and professional viewers. Dupuytren.tv also hosts an archive of video presentations from the international conferences described in section 4e. The value of this program is to increase physician and public awareness of the burden of Dupuytren disease and increase enrollment in the IDDB research program.Education: Brochure creation and distribution. DRG produces and distributes patient education brochures on request to physician offices, therapy offices and patient advocates without charge. Over 2000 awareness brochures were distributed in 2018.The value of this program is to increase physician and public awareness of the burden of Dupuytren disease and increase enrollment in the IDDB research program.Education: Public / online seminars. DRG organizes public outreach efforts in person and through social media.The value of this program is to increase public awareness of the burden of Dupuytren disease and increase enrollment in the IDDB research program.

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