National Canadian SIH Registry
About the SIH Registry research
This research focuses on adult patients diagnosed with Spontaneous Intracranial Hypotension (SIH). There is currently a substantial lack of data across many aspects of SIH, including the long-term effectiveness of treatments, patient-reported outcomes (PROs), healthcare resource utilization, and gaps in care. In addition, limited information exists regarding equity, diversity, and inclusion (EDI) factors and their impact on patient outcomes and access to care.
Currently, the Universities of Calgary and Toronto (Tororo Western Hospital) have established SIH registries and are actively recruiting patients. The development of these registries was supported through funding provided by Spinal CSF Leak Canada.
Our goal is to expand this registry nationwide and support collaboration between centres across Canada.
Purpose of the SIH Registry
The purpose of the SIH Registry is to improve our understanding of:
Epidemiology
Diagnosis
Clinical characteristics
Most useful imaging modalities
Treatments and management
Prognosis
Natural history of SIH
Research Objectives
Build national registry infrastructure, establish collaborations, and develop standardized data collection protocols.
Collect prospective longitudinal data on SIH patients including demographics, symptoms, imaging findings, treatments, outcomes, healthcare resource utilization, and patient-reported outcomes.
Analyze data to identify gaps in care, assess access to treatment, and disseminate findings to healthcare professionals and policymakers.
Monitor improvements in care pathways, measure changes in patient outcomes, and evaluate the cost-effectiveness of interventions.
Why This Research Matters
Spinal CSF Leak Canada believes this SIH Registry will become an important national resource that will help researchers answer critical questions about SIH and gain a deeper understanding of the disease.
In particular, the data collected through the registry may help researchers:
Better understand factors associated with recurrence of SIH
Identify the most effective treatment approaches
Improve diagnostic pathways
Reduce delays in diagnosis and care
Improve patient outcomes and quality of life
Support future research initiatives and collaborations
Current Participating Centres
Current participating centres include:
University of Calgary (Click HERE to learn more about the SIH registry at the University of Calgary)
University Health Network / Toronto Western Hospital
Future expansion to additional Canadian centres is planned.