Invited Speaker Australian and New Zealand Stroke Organisation Conference 2025

International Network for Standardised Population Insights and Real-world Evidence for Stroke (INSPIRE-STROKE)  (123207)

Lachlan L. Dalli 1 , Muideen T. Olaiya 1 , Amy Y.X. Yu 2 , Hanne Christensen 3 , Seana L. Gall 1 4 , Dominique A. Cadilhac 1 5 , Moira K. Kapral 6 , Bo Norrving 7 , Valery Feigin 8 , Matthew J. Reeves 9 , Yannick Béjot 10 , Anne-Marie Schott 11 , Nishant K. Mishra 12 , Lee Nedkoff 13 , Eric E. Smith 14 , Michael D. Hill 15 , Wen-Jun Tu 16 , Monique F. Kilkenny 1 5
  1. Stroke and Ageing Research, Department of Medicine, School of Clinical Sciences at Monash Health, Monash University, Clayton, Victoria, Australia
  2. Department of Medicine (Neurology), University of Toronto, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
  3. Copenhagen University Hospital, Bispebjerg Hospital, Copenhagen, Denmark
  4. Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia
  5. Stroke Theme, Florey Institute of Neuroscience and Mental Health, The University of Melbourne, Heidelberg, Victoria, Australia
  6. Department of Medicine (General Internal Medicine) and Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Ontario, Canada
  7. Department of Clinical Sciences, Department of Neurology, Skåne University Hospital, Lund University, Lund, Sweden
  8. National Institute for Stroke & Applied Neurosciences, Auckland University of Technology, Auckland, New Zealand
  9. Department of Epidemiology and Biostatistics, Michigan State University, East Lansing, Michigan, USA
  10. Université Bourgogne Europe, CHU Dijon Bourgogne, Department of Neurology, Dijon Stroke Registry PEC2 UR 7460, 21000 Dijon, France
  11. University Claude Bernard Lyon 1, RESHAPE, U.INSERM 1290, Hospices Civils de Lyon, Lyon, France
  12. Department of Neurology, Yale University School of Medicine and West Haven VA Medical Center, West Haven, CT 06516, USA
  13. Victor Chang Cardiac Research Institute, The University of Western Australia , Perth, Western Australia, Australia
  14. Department of Clinical Neurosciences and Hotchkiss Brain Institute, University of Calgary, Calgary, AB T2N 1N4, Canada
  15. University of Calgary, Calgary, Canada
  16. Department of Neurosurgery, Beijing Tiantan Hospital, Capital Medical University, Beijing, China

Background and aims: Many international collaborations (e.g. Global Burden of Disease and Stroke Service Tracker) have demonstrated the feasibility of comparing country-level stroke data (e.g., incidence). Opportunities exist to harness registries and administrative data from across the globe to compare important stroke treatments and outcomes. The INSPIRE-STROKE network aims to develop and implement new methods to harmonise and combine stroke data to more reliably undertake multi-country stroke surveillance.

Methods: Following an in-person meeting (May 2024), members set the vision, terms of reference, and priorities for the network. Mortality, medication adherence, and readmissions were identified as initial priority areas. Projects will be undertaken to demonstrate the feasibility of standardising registry and administrative data to reliably compare results between participating countries for the initial priority areas.

Results: Currently, INSPIRE-STROKE comprises 35+ collaborators from 14+ countries (Australia, Austria, Canada, China, Denmark, France, Italy, Korea, New Zealand, Poland, Sweden, Switzerland, UK, USA) with access to stroke data. A proof-of-concept project is now being undertaken to standardise measures and case definitions of medication adherence, mortality and readmissions. Planned steps involve: 1) assessment of variables and data systems; 2) creating a common data model; 3) assessing data quality; 4) developing statistical coding; 5) implementing statistical codes using a distributed approach; 6) analyses and reporting of pooled data.

Conclusion: We have established INSPIRE-STROKE to advance global collaboration in the analysis of routinely collected health data. Through the standardisation of population metrics in our initial proof-of-concept projects, we will demonstrate the feasibility of this initiative for global expansion.