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. Layman's Abstract Canada currently lacks a national registry of individuals with limb loss and limb difference (LLD), which limits our understanding of how many Canadians have limb loss or limb difference, and the effectiveness of healthcare services. Without consistent national data collection, it is impossible to understand regional differences in care, including prosthetic interventions and rehabilitation. This initiative gathered insights from representatives of the LLD community on establishing a Canadian LLD registry to improve research, healthcare delivery, and advocacy. Ninety-six LLD experts and professionals were identified to participate in a two-stage process that included a survey and virtual workshop. Fifty-three individuals (55%) completed the survey. On February 14, 2024, 64 (67%) individuals (63 Canadian and 1 American) attended the virtual workshop. The workshop included presentations on the development of the American Limb Loss and Preservation registry and the Canadian Rick Hansen Spinal Cord Injury registry, and measuring Canadian LLD outcomes. The meeting explored the feasibility, vision, and strategies for creating a Canadian LLD registry. Findings from the survey and workshop showed strong support for the registry, and workshop attendees discussed a number of critical areas for its development and sustainability. While some challenges regarding privacy, infrastructure, and sustainability still need to be addressed, there was agreement among meeting attendees on a strategy to start planning a registry. A Canadian registry would support advocacy efforts, enhance clinical care, encourage collaborative research, and provide essential data about care nationwide to ensure that the health and social care needs of the LLD community are met. Work is continuing to create and fund a Canadian LLD registry. Article PDF Link: https://jps.library.utoronto.ca/index.php/cpoj/article/view/46909/34865 How To Cite: Mayo A.L, Hitzig S.L, Zidarov D, MacKay C, Kaufman K.R, Noonan V.K, et al. A national strategy for a Canadian limb loss and limb difference registry. Canadian Prosthetics Volume 9, Issue 1, No. 3. https://doi.org/10.33137/cpoj.v9i1.46909 Corresponding Author: Dr. Amanda L. Mayo, MD, MHSc, FRCPC, Affiliations: 1) St. John’s Rehab, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada; 2) St. John’s Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada; 3) Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.E-Mail: amanda.mayo@sunnybrook.caORCID ID: https://orcid.org/0000-0001-7061-2529