A national strategy for a canadian limb loss and limb difference registry

Canada lacks a national data source on individuals with limb loss and limb difference (LLD), which limits understanding of incidence, prevalence, risk factors, etiology, and healthcare outcomes. In the absence of standardized data collection, the provision of LLD healthcare services in Canada remains inconsistent. The objective of this study was to gather key interest groups' perspectives on the development of a Canadian LLD registry. Invitees were identified through professional networks and snowball recruitment techniques. A two-round modified Delphi approach was utilized to identify key LLD registry domains via a pre-meeting survey followed by a virtual workshop on February 14, 2024. Of 96 invitees, 53 completed the survey, and 64 attended the workshop (63 from Canada and 1 from the United States). Five key LLD registry domains were identified: representation, standardization, practice-based evidence, research and innovation, and policy and funding. Inclusivity of diverse populations, national outcome measures adoption, and integration of psychosocial and clinical data was emphasized. Foreseen challenges included privacy concerns, necessary infrastructure, and resources to ensure long-term sustainability. Despite these challenges, a Canadian LLD registry could support advocacy, strengthen practice-based evidence, enhance research collaboration, improve clinical care, and inform population-level policies. Efforts to develop the registry are ongoing.