A team of Canadian researchers, along with Kenton Kaufman, PhD, proposed a Canadian data source on individuals with limb loss and limb difference, noting that the lack of a national resource limits understanding of incidence, prevalence, risk factors, etiology, and healthcare outcomes. Kaufman was instrumental in development of the US-based Limb Loss and Preservation Registry.
In the absence of standardized data collection, the provision of healthcare services in Canada for people with limb loss and limb difference is inconsistent, the researchers said, leading them to gather key interest groups’ perspectives on the development of a Canadian registry.
A two-round modified Delphi approach identified key domains for a potential registry via a pre-meeting survey followed by a virtual workshop. Of 96 invitees, 53 completed the survey, and 64 attended the workshop (63 from Canada and one from the United States).
Five key registry domains were identified: representation, standardization, practice-based evidence, research and innovation, and policy and funding. There was emphasis on inclusivity of diverse populations, national outcome measures adoption, and integration of psychosocial and clinical data.
Despite challenges of privacy concerns, necessary infrastructure, and resources to ensure long-term sustainability, the research team concluded that a Canadian limb loss and limb difference 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.
To read the open-access study, “A national strategy for a Canadian Limb Loss and Limb Difference Registry,” visit the Canadian Prosthetics & Orthotics Journal.
