Dupuytren Research Group

What Dupuytren Research Group does

Dupuytren Research Group is a 501(c)(3) nonprofit public charity founded in 2008–2009 (originally as the Dupuytren Foundation, rebranded in January 2019) and headquartered in West Palm Beach, Florida. Its mission is to develop a cure for Dupuytren disease, a chronic progressive genetic condition that causes permanently bent fingers and currently is treated only with procedures (surgery, needle fasciotomy, collagenase injection) that do not prevent recurrence. The organization is led by founder and Executive Director Dr. Charles Eaton MD, a retired hand surgeon, alongside a small 1–10 person team and a Board of Directors.

The organization's core research asset is the International Dupuytren Data Bank (IDDB), launched in November 2015 in partnership with the National Databank of the Rheumatic Diseases. IDDB is a direct-to-patient, crowdsourced research platform targeting 10,000 Dupuytren patients and 1,000 controls, using HIPAA-compliant online surveys and blood sample collection to identify biomarkers for a Dupuytren blood test. As of 2020 the IDDB had enrolled 4,465 participants from 48 countries, and a complementary Dupuytren Blood Biomarker Pilot Study is in the analysis phase. Genomic data collaboration is enabled through the PrecisionFDA US Government cloud platform. Supporting assets include the quinquennial International Conference on Dupuytren Disease (Miami 2010, Groningen 2015, Brussels 2025 — the latter drawing 200+ participants from 17 countries), the Dupuytren.tv YouTube channel, free patient brochures, and the DRG Literature Archives.

Dupuytren Research Group operates a donation-only revenue model with no pharmaceutical or government funding. All participant services — IDDB enrollment, blood sample collection phases, and educational brochures — are free, funded entirely by charitable giving from individuals, family foundations (notably the Hermann Foundation and The Margaret Cameron & James M. Glickenhaus Foundation in 2024), and corporate matching programs (e.g., Caterpillar Foundation). The go-to-market motion is community-led and event-driven: direct-to-patient online enrollment, healthcare provider referrals (hand surgeons and therapists), public awareness seminars, and fundraising events such as the 2024 Leadville 100 ultramarathon run. Stated financial anchors include a $400,000 laboratory budget and a $250,000 2024 research fundraising goal.

Name

Dupuytren Research Group

Legal name

Dupuytren Research Group

Website

https://dupuytrens.org/

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

1–10 employees

Short description

Dupuytren Research Group is a 501(c)(3) nonprofit that operates the International Dupuytren Data Bank and conducts biomarker research aimed at developing a Dupuytren blood test and cure, serving Dupuytren patients, healthcare providers, and donor-funders globally.

Ownership category

akta.pro rank

Product category

Rare Disease Research

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease research
• Biomarker discovery
• Patient data registry
• Nonprofit medical research
• Genomic biomarker studies

Headquarters

HQ city

West Palm Beach

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Technology or R&D, Personnel, Operations, Marketing or Sales, Infrastructure

Revenue model

1. Charitable Donations: The organization is supported entirely by charitable giving from individuals, foundations, and corporate matching programs. No pharmaceutical or government funding.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

Dupuytren Research Group operates the International Dupuytren Data Bank (IDDB), a free, direct-to-patient, crowdsourced research platform enrolling 10,000+ participants with and without Dupuytren disease to collect surveys and blood samples for biomarker discovery aimed at developing a Dupuytren blood test. The organization also runs the Dupuytren Blood Biomarker Pilot Study to identify biomarkers that measure disease activity and predict treatment response, and produces free patient education brochures, a video channel (Dupuytren.tv), a quinquennial international conference, and a literature archive. All activities are conducted through a 501(c)(3) nonprofit funded entirely by charitable donations.

Product overview

The Dupuytren Research Group is a 501(c)(3) nonprofit conducting research to find a cure for Dupuytren disease. Their primary offerings include the International Dupuytren Data Bank (IDDB), a direct-to-patient research platform that combines surveys with planned blood sample collection to identify biomarkers for a Dupuytren blood test; the Dupuytren Blood Biomarker Pilot Study for blood sample analysis; and free patient education brochures. They organize quinquennial international conferences and maintain a video content channel. The organization operates from West Palm Beach, Florida, and is supported entirely by charitable donations, with a stated laboratory budget of $400,000.

Differentiator

Problem solved

Functional benefit

Products and services

• International Dupuytren Data Bank (IDDB) A free, direct-to-patient, crowdsourced research platform enrolling 10,000+ participants with and without Dupuytren disease. Participants complete online surveys and provide blood samples to enable biomarker discovery and the development of a Dupuytren blood test and preventive treatments. Hosted on a HIPAA-compliant infrastructure provided by the National Databank of the Rheumatic Diseases.
• Dupuytren Blood Biomarker Pilot Study Blood-sample collection and analysis study to identify biomarkers that can measure Dupuytren disease activity, predict progression risk, and evaluate potential drug treatments. The pilot phase completed sample collection, with analysis underway.
• Patient Brochures Free educational brochures available in packs of 30 for healthcare provider waiting rooms, qualifying as Stage 2 Meaningful Use Patient Specific Educational Resources. Includes Dupuytren Disease and IDDB Explanation brochures, available as mail requests (North America) or downloadable PDFs worldwide.

Quantifiable outcome

• 4465 enrollees from 48 countries enrolled in IDDB as of 2020
• +1 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration2 records

Feature3 records

Partnerships

Four partnerships are on record, tiered core and minor.

• National Databank of the Rheumatic DiseasescoreStrategic or Co-development PartnerPartnership for hosting the International Dupuytren Data Bank (IDDB). The National Databank of the Rheumatic Diseases provides the online enrollment form and survey platform for the IDDB research project, enabling secure HIPAA-compliant data collection from participants worldwide.
• International Dupuytren SocietyminorStrategic or Co-development PartnerCollaborative partnership for patient surveys and shared resources. The International Dupuytren Society, along with Ledderhose Blog and British Dupuytren Society, jointly developed questionnaires targeting patients with Dupuytren and/or Ledderhose disease.
• PrecisionFDA (FDA)coreTechnology or IntegrationPrecisionFDA is a US Government initiative supporting cutting-edge genomic research. Dupuytren Research Group uses PrecisionFDA cloud hosting to allow authorized researchers worldwide to collaborate and analyze data from the International Dupuytren Data Bank.
• Daniel Kinek (Ultramarathon Runner)minorGTM or Marketing PartnerIndividual fundraiser who completed the Leadville 100-mile trail race in August 2024 to raise awareness about Dupuytren disease and support research for a cure. Family personally affected by Dupuytren.

Scale indicators7 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• National Organization for Rare Disorders (NORD): Umbrella advocacy and research-funding nonprofit for rare diseases. Directly comparable as a 501(c)(3) operating in the rare disease space with patient registries, research grant programs, and awareness events, but serving many diseases rather than one.
• ALS Association: National disease-specific health nonprofit funding research, patient services, and advocacy for ALS. Closely comparable to DRG in mission structure (find a cure for a specific progressive disease), donor-funded model, and reliance on grassroots awareness and family-driven fundraising.
• International Dupuytren Society: European Dupuytren patient organization listed as a DRG partner for joint survey development. Direct peer in the same niche, focused on patient advocacy and education rather than blood-test research.
• Global Genes: Allied rare disease nonprofit that awarded DRG the 2019 Rare Champion of Hope award. Comparable in mission (rare disease advocacy and empowerment), though broader in scope and explicitly a DRG peer through the award relationship.
• Muscular Dystrophy Association: Disease-specific health nonprofit funding neuromuscular disease research and clinical care. Comparable to DRG in patient registry operations, research grantmaking, and donor-funded model, though at significantly larger scale.
• Parent Project Muscular Dystrophy: Disease-specific health nonprofit focused on Duchenne muscular dystrophy. Comparable as a smaller, research-driven rare-disease 501(c)(3) that maintains a patient registry and pursues biomarker and gene-therapy research with donor funding.
• Cystic Fibrosis Foundation: Disease-specific 501(c)(3) that funds drug development and biomarker research for cystic fibrosis. Closely comparable in operating model: targeted research funding, partnership with biotech/pharma, patient registry infrastructure, and a singular cure-oriented mission.
• Charcot-Marie-Tooth Association: Disease-specific health nonprofit funding research for an inherited progressive peripheral nerve disorder. Comparable in operating model to DRG: rare genetic disease, donor-funded research focus, patient registry, and biomarker discovery as central scientific priorities.

Broad incumbents

• Arthritis Foundation: Large disease-focused nonprofit covering musculoskeletal and rheumatic conditions. Related through DRG's partnership with the National Databank of the Rheumatic Diseases, and indirectly relevant given Dupuytren's classification as a fibroproliferative musculoskeletal disorder.

Regional players

• British Dupuytren Society: UK-based Dupuytren patient organization also named as a DRG partner for joint survey work. Closely comparable in mission but operates primarily in the UK while DRG is US-led; useful peer for international collaboration patterns.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xtwitter.com/dupuytren
• YouTubeyoutube.com/DupuytrenFoundation
• Facebookfacebook.com/dupuytrens
• LinkedInlinkedin.com/groups/4868601
• Instagraminstagram.com/Dupuytrens

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Dupuytren Research Group