Dupuytren Research Group Inc.
Dupuytren Research Group Inc.
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About this organization
Mission
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.
About
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.
Interesting data from their 2019 990 filing
The filing specifies the mission of the non-profit as “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.”.
When explaining its duties, they were described as: “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.”.
- The state in which the non-profit is authorized to operate legally is FL.
- According to the filing, the address of the non-profit for the year 2019 is 1850 Forest Hill Blvd, West Palm Beach, FL, 33406.
- The non-profit has reported 1 employees on their form for the year 2019.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Does not have foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are between $100,000 and $250,000.
- Revenue is between $100,000 and $250,000.
- Revenue less expenses is $77,374.
- The CEO compensation strategy within the organization is determined through a thorough evaluation and endorsement by an independent source.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 7 independent voting members.
- The organization was formed in 2008.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization pays $0 in salary, compensation, and benefits to its employees.
- The organization pays $8,351 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.