A large body of evidence suggests a genetic basis for aggressive Dupuytren Disease. Meaningful progress pinpointing genetic origins of Dupuytren Disease requires a sample size of at least 10,000 affected patients with disease in addition to control data. A minimum enrollment of 1000 control patients will qualify the IDDB to access additional genetic data from NIH genetic archives. These are minimum numbers. Even with an optimistic study completion rate of 50 %, this projects to initial enrollment of 22,000 patients.

Traditionally, large-scale surgical disease research is organized through a surgical registry. In the registry model, surgeons collect and share data on their own patients treated for a specific diagnosis. The registry compensates the surgeon’s practice for cost and staffing involved in registry participation. Assuming as many as 70,000 Dupuytren procedures is performed annually in the USA (a high estimate) and knowing that the American Society for Surgery of the Hand has over 3000 US members (a low estimate of all US doctors performing hand surgery), the average US hand surgeon performs at most two dozen Dupuytren procedures each year. This makes a registry approach impractical for a study of this size. The IDDB uses direct patient enrollment via secure online forms as a more practical and cost-efficient alternative. Using validated tools for self-diagnosis (Pervulesko et al. 2011) and self-reported contracture severity (Dias and Braybrooke 2006), patients need not see a physician to participate (Figs. 56.1 and 56.2). Direct patient enrollment has the additional advantage of including patients not seen by surgeons, such as those with early disease, those pursuing alternative treatment options, and those avoiding consultation, because of unpleasant rumors or prior experience with Dupuytren procedures. Data from such patients, or from patients with complicated treatment histories (typically excluded from standard registry models), will be captured through direct enrollment.

The IDDB uses a variety of pathways to recruit enrollees, including online tools (e-mail, social media, and website presence) and print patient brochures provided to hand surgeons and therapists (Table 56.1).

Enrollment uses secure online forms. The initial enrollment form captures generic demographic information, Dupuytren diathesis factors, personal Dupuytren history, and patient reported assessment of current deformity and quality of life impact of Dupuytren Disease. Follow-up surveys are provided every 6 months thereafter to document progression, treatment, and targeted follow-up of outliers who may provide unique insights, such as those with very aggressive or unusual presentation of disease, dense family history, monozygotic twins, non-Caucasians, and others. Follow-up surveys may also include questions targeting potential associations not included in prior surveys.