What is Dupuytren Disease?

Dupuytren disease (DD) affects the hands of about 30 million people worldwide, including 10 million in the US. Dupuytren disease affects the palms of the hands. It can cause deformity which prevents the fingers from straightening. Most people are diagnosed as adults - DD is uncommon under the age of 40. On average, men are affected more often and at a younger age than women. Dupuytren disease can be painful, but usually it is not. The most common problem is deformity which slowly worsens over time, and can progress from an awkward nuisance to loss of hand use from severe contracture. Dupuytren disease is diagnosed by its appearance - nodules, knuckle pads, cords and contractures, as shown below. There is not yet a definitive laboratory test ("biomarker") for Dupuytren disease. DD may be initially diagnosed by a rheumatologist, but long term management is typically provided by a hand surgeon.

Dupuytren Nodules

Dupuytren Knuckle Pads

Dupuytren Cord

Dupuytren Contracture

 

 

Dupuytren disease is a chronic fibrotic condition primarily affecting the flesh beneath the skin of the palms. These areas can develop thick scar tissue under the skin, which slowly shrinks and pulls the fingers into a bent position. People suffering from Dupuytren disease are more likely than the average population to have related conditions, including Ledderhose disease (in the instep of the foot), adhesive capsulitis (frozen shoulder), and Peyronie disease (of the penis). Dupuytren severity varies greatly from person to person. Some may have a lump in the palm never needing treatment. Some may need just one procedure during their lifetime, others have ongoing problems despite many procedures and retreatments. The root cause of Dupuytren disease is unknown. Many, but not all patients appear to have a family or genetic predisposition. In some ways, it may resemble infection or cancer, but it is neither. The immune system is involved, but not exactly like an autoimmune disease. Because it affects the connective tissues, it is a rheumatic disease, but because there is not yet an effective medicine, treated as a surgical disease.

Treatment is for correction of deformity from Dupuytren contracture. There is no widely accepted form of preventative treatment, although some groups advocate radiation, medication, or splinting for early stage disease. The effectiveness of preventative treatment is difficult to prove because disease progression varies greatly and can't be predicted on an individual basis. Hand surgeons perform a range of surgeries and minimally invasive procedures for correction of finger deformities. The choice of procedure depends on the patient's risk factors and pattern of deformity. Because there is no known Dupuytren medicine, there is always the possibility of return of deformity or progression in new areas after treatment. The goal of the International Dupuytren Data Bank is to gather enough data from Dupuytren patients to assess the effectiveness of different treatments in different risk groups, develop effective individualized treatment protocols, and eventually a cure.

 

Dupuytren Disease Research Trends

Risk factors for severe Dupuytren disease

Genetics

Biomarkers ("Proteomics")

Patient reported outcome and quality of life surveys

Comparison of different procedure effectiveness

Comparison of different procedure longevity

Effect of medicines for other conditions on disease activity

Effect of radiation therapy on disease progression

Surgery and adjuvant medications or absorbable implants

 

FORWARD and Dupuytren research

What are your important concerns about living with a rheumatic disease like Dupuytren disease (DD)? Is your treatment effective? We believe that DD and rheumatic disease research needs the personal perspective of people who have rheumatic diseases.

FORWARD conducts patient-reported research. All of our data comes directly from people with DD, which gives us the ability to see how people live with DD in the real world. We focus on treatment safety, costs and outcomes (how well treatments work). FORWARD is collaborating with the Dupuytren Research Group to host this International Dupuytren Data Bank with the long term goal of finding a cure for Dupuytren disease and related conditions.

Anyone with is welcome to participate in this Dupuytren research and lend a hand in improving treatment and care. Learn more about participating.