Michelle Batthish1, Roberta Berard2, David Cabral3, Roxana Bolaria3, Gaëlle Chédeville4, Ciaran Duffy5, Kerstin Gerhold6, Tommy Gerschman3, Adam Huber7, Jean-Philippe Proulx-Gauthier8, Alan Rosenberg9, Dax Rumsey10, Heinrike Schmeling11, Natalie Shiff12, Gordon Soon13, Alessandra Bruns14, Lori Tucker3, Jaime Guzman3. 1. Division of Rheumatology, Department of Pediatrics, McMaster University, Hamilton, Ontario. 2. Division of Rheumatology, Department of Pediatrics, Western University, London, Ontario. 3. Division of Rheumatology, Department of Pediatrics, University of British Columbia, Vancouver, British Columbia. 4. Division of Rheumatology, Department of Pediatrics, McGill University, Montreal, Quebec. 5. Division of Rheumatology, Department of Pediatrics, University of Ottawa, Ottawa, Ontario. 6. Division of Rheumatology, Department of Pediatrics, University of Manitoba, Winnipeg, Manitoba. 7. Division of Rheumatology, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia. 8. Division of Rheumatology, Department of Pediatrics, Université Laval, Laval, Quebec. 9. Division of Rheumatology, Department of Pediatrics, University of Saskatchewan, Saskatoon, Saskatchewan. 10. Division of Rheumatology, Department of Pediatrics, University of Alberta, Edmonton, Alberta. 11. Division of Rheumatology, Department of Pediatrics, University of Calgary, Calgary, Alberta, Canada. 12. Division of Rheumatology, Department of Pediatrics, University of Florida, Gainesville, FL, USA. 13. Division of Rheumatology, Department of Pediatrics, University of Toronto, Toronto, Ontario. 14. Division of Rheumatology, Department of Pediatrics, University de Sherbrooke, Sherbrooke, Quebec, Canada.
Abstract
OBJECTIVES: The aim was to describe the design, methods and initial findings of a new Canadian inception cohort of children with JIA, The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) JIA Registry. METHODS: The CAPRI JIA Registry was started in 2017 to collect information prospectively on children enrolled within 3 months of JIA diagnosis across Canada. The registry has a non-traditional modular design, with no artificially set times for registry visits to occur, streamlined multi-method data collection that requires 2-4 min per visit, and reports cumulative incidence of treatments, outcomes and adverse events calculated by Kaplan-Meier survival methods. RESULTS: A total of 166 patients, enrolled a median of 6 weeks after JIA diagnosis at 10 centres, were included. The median age at diagnosis was 9 years [interquartile range (IQR) 3, 13], 61% were female and 51% had oligoarticular JIA. The median three-variable clinical Juvenile Arthritis Disease Activity Score was 6.5 (IQR 4, 10) at enrolment, and the median time to first attainment of clinically inactive disease (CID) was 24 weeks (by 1 year, 81%). Within 1 year of diagnosis, 70% of patients had started a DMARD and 35% a biologic agent. The rates of adverse events and serious adverse events were 60 and 5.8 per 100 patient-years, respectively. CONCLUSION: This streamlined and flexible registry minimizes the burden of data collection and interference with clinic operations. Initial findings suggest that treatments for newly diagnosed patients with JIA in Canada have intensified, and now 81% of patients attain CID within 1 year of diagnosis.
OBJECTIVES: The aim was to describe the design, methods and initial findings of a new Canadian inception cohort of children with JIA, The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) JIA Registry. METHODS: The CAPRI JIA Registry was started in 2017 to collect information prospectively on children enrolled within 3 months of JIA diagnosis across Canada. The registry has a non-traditional modular design, with no artificially set times for registry visits to occur, streamlined multi-method data collection that requires 2-4 min per visit, and reports cumulative incidence of treatments, outcomes and adverse events calculated by Kaplan-Meier survival methods. RESULTS: A total of 166 patients, enrolled a median of 6 weeks after JIA diagnosis at 10 centres, were included. The median age at diagnosis was 9 years [interquartile range (IQR) 3, 13], 61% were female and 51% had oligoarticular JIA. The median three-variable clinical Juvenile Arthritis Disease Activity Score was 6.5 (IQR 4, 10) at enrolment, and the median time to first attainment of clinically inactive disease (CID) was 24 weeks (by 1 year, 81%). Within 1 year of diagnosis, 70% of patients had started a DMARD and 35% a biologic agent. The rates of adverse events and serious adverse events were 60 and 5.8 per 100 patient-years, respectively. CONCLUSION: This streamlined and flexible registry minimizes the burden of data collection and interference with clinic operations. Initial findings suggest that treatments for newly diagnosed patients with JIA in Canada have intensified, and now 81% of patients attain CID within 1 year of diagnosis.
Authors: Luiza R Grazziotin; Gillian Currie; Marinka Twilt; Maarten J Ijzerman; Michelle M A Kip; Hendrik Koffijberg; Susanne M Benseler; Joost F Swart; Sebastiaan J Vastert; Nico M Wulffraat; Rae S M Yeung; Deborah A Marshall Journal: Pediatr Rheumatol Online J Date: 2022-04-11 Impact factor: 3.054
Authors: Flora McErlane; Chris Anderson; Saskia Lawson-Tovey; Barbara Lee; Chris Lee; Laura Lunt; Janet E McDonagh; Andrew D Smith; Nicola Smith; Gavin Cleary Journal: Pediatr Rheumatol Online J Date: 2022-06-18 Impact factor: 3.413