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 Across Canada, the Rick Hansen Spinal Cord Injury Registry is collecting comprehensive SCI data for the purpose of improving SCI care and clinical outcomes. The Registry promotes, encourages and supports the pursuit of excellence in SCI health care management. Many disciplines within the SCI care and research continuum are already benefitting from their participation in the Registry:
- Researchers value the Registry as the foundation that supports their involvement in SCI research. They use the Registry to identify and validate research opportunities, to aid their pursuit of funding and industry partnerships, and ultimately to support leading edge research that facilitates the development and validation of effective interventions and therapies.
- Health care providers can identify and access their patients' data relevant to the Registry, and consult the Registry as a tool to gauge effectiveness of clinical interventions in the acute, rehabilitation, and community settings.
- Managers and decision-makers consult the Registry for data on system performance, service planning, and developing effective health policy.
The Registry has refined a core set of clinical/research objectives:
1. Clinical Support and Management
To promote, encourage and develop an efficient and effective national SCI data retrieval and management reporting service. Create a standardized national database of SCI events.
Secure data warehouse which contains health data on individuals with spinal cord injuries.
Development of datasets that support a prospective approach to patient monitoring, evaluation and improvement of quality of care and outcomes across the care delivery continuum from point of injury and acute care through rehabilitation and including community integration and future support.
The provision of de-identified data that will support policy development to ascertain cost effectiveness and service utilization for the SCI population.
Development of collaboration tools that will provide access and links to health care services to facilitate dialogue between individuals with SCI, researchers, and health care providers.
Promote and enable the use of a standardized approach to the collection, management, and dissemination of SCI information.
Provide a reporting tool and associated support services at the local, regional, provincial/territorial and national levels to ensure results are distributed to study stakeholders.
Provide system support and reporting services to RHSCIR sites.
2. Research Support
To create a clinical and epidemiological-based information service in order to promote collaboration between scientists and clinicians, and support true translational research and provincial, national and international data exchange and collaboration:
Allow researchers to identify and assess impact of interventions on patient outcomes as measured by specific interventions, practice design/changes, program design/changes, and changes to functional capacity over time..
Perform high quality population observational studies, document the natural history of SCI, determine the effectiveness of current treatment strategies, proposed best practices and novel therapeutic initiatives (surgical, pharmaceutical, or rehabilitative).
3. Partnership and Quality Improvement
To demonstrate flexibility and adaptability in helping partners to achieve their SCI information goals:
- Identify opportunities to work within the SCI care system in achieving SCI information goals.
- Ensure individuals in the SCI community are active participants in the design, development and evolution of the Registry.
- Develop longitudinal tracking capabilities based on strategic linkages across care delivery systems and partnerships with relevant stakeholders.
- Record validated and standardized outcomes for specific injury levels and categories.
4. Quality Data and Information
To ensure the data quality of the national Registry:
- Establish standardized data definitions.
- Identify standard procedures for data retrieval from third party sources.
- Establish internal quality assurance mechanisms to monitor data quality: maintain extensive system of checks and balances for data quality including training programs, site monitoring, system queries and validations, and on-line standard operating procedures and help systems.
- Foster an environment of continuous improvement, and corrective and preventative action (CAPA).
- Establish quality control monitoring tools to ensure data accuracy, timeliness and completeness.
- Evaluate Registry effectiveness and its impact on patterns of practice and outcomes using Key Performance indicators.
5. Business Planning and Future Development
To remain current with changing trends and issues in health care management:
- Actively network with key resource people and organizations on a regional, provincial/territorial and national basis to facilitate the identification, validation, and implementation of best practices across Canada.
- Establish relationships with other SCI-related North American and International data systems..
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For Researchers and Clinicians 
