Factors Associated With Consent and Opportunities to Increase Participation in the Rick Hansen Spinal Cord Injury Registry: A Population-Based Study

Disease-specific registries that record patient data are crucial in supporting research, guiding best practices, and optimizing resource allocation. Since 2004, the Canadian Rick Hansen Spinal Cord Injury Registry (RHSCIR) has collected data from over 10,000 individuals with SCI. The primary objective of this study was to identify factors associated with consenting to RHSCIR and reasons for withdrawal to improve registry inclusivity and representativeness in persons with traumatic SCI (TSCI). This retrospective cohort study analyzed data from 4090 participants enrolled at RHSCIR acute facilities from 2009 to 2019. Participants were categorized into 3 groups: declined consent (DC), provided full consent (FC), or provided minimal consent and/or later withdrew consent (MWC). Due to the lack of available data for the DC group, descriptive and multivariable analyses focused on the FC and MWC groups to identify factors associated with full consent. Of 4090 participants, 2998 (73.3%) were FC, and 856 (20.9%) were MWC. After adjusting for significant differences between the groups, older age and an absence of comorbidities were associated with a decreased likelihood of providing FC. Individuals living in the Atlantic provinces and Ontario showed a higher likelihood of FC than those in the Prairies. The primary reason for withdrawing was a lack of interest. This study identifies factors associated with participation and suggests strategies to increase recruitment and inclusivity in RHSCIR. By understanding registry participation, public health policies can be informed, resource allocation optimized, and patient care enhanced for individuals with TSCI.