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Table 1 Summary of JIA registries and cohort studies

From: A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities

Study Name and Published Reference Country Start Year Approx. number of patients Children/adults enrolled Minimum Follow-up (Years) Active Follow-up after Transition of Care Active Recruitment Active Follow-up
Inception Cohorts
 CAPS
[Childhood Arthritis Prospective Study] [19]
UK 2001 1500 Children 10 years or transition No (patient questionnaire at age 18 and 21 years) Yes Yes
 ICON
[Inception Cohort of Newly Diagnosed Children with JIA] [35]
Germany 2010 950 Children 10 Yes No Yes
 JACS
[Juvenile Arthritis Cohort Study]
Australia 2012 25 Children To transition No Yes Yes
 Nordic JIA Cohort [24] Sweden, Finland, Denmark, Norway, Iceland 1997 1200 Children 15 Yes Yes Yes
 ReACCh Out
[Research in Arthritis in Canadian Children Emphasizing Outcomes] [36]
Canada 2005 1500 Children 5 No No Yes
Prevalent Disease Cohorts
 CARRA Legacy
[Childhood Arthritis and Rheumatology Research Alliance] [37]
USA, Canada 2010 6600 Children Until 2013 No No No
 CARRA (current)a
[Childhood Arthritis and Rheumatology Research Alliance] [14]
USA, Canada 2015 994 Children 10 Yes, via Call centre Yes Yes
 NPRD
[National Pediatric Rheumatology Database] [38]
Germany 1997 ~29,000 Children Unlimited No Yes Yes
 PHARMACHILD (Retrospective)
[Pharmacovigilance in Juvenile Idiopathic Arthritis Patients]
Multi-national 2011 7000 Children Retrospective data collection only No Yes Yes
 Reuma.pt [9] Portugal/Brazil 2009 1188/310 Both Unlimited Yes Yes Yes
 Swedish JIA Register Sweden 2009 1800 Children To transition No Yes Yes
Treatment Cohorts
 ABC
[Arthritis and Biologicals in Children] [39]
Netherlands 1999 425 Children To transition No No No
 BiKeR
[Biologics in Pediatric Rheumatology] [10, 11]
Germany, Austria 2001 3743 Children To transition No Yes Yes
 JuMBO
[Juvenile Arthritis Methotrexate Biologics Long-Term Observation] [8]
Germany 2007 1100 Adults 10 Follow-up to BIKER study Yes Yes
 BCRDb
[Biologics for Children with Rheumatic Diseases] [13]
UK 2010 850 Children 10 Yes Yes Yes
 BSPAR-ETNb
[British Society for Pediatric and Adolescent Rheumatolgy-Etanercept] [12]
UK 2003 1400 Children Unlimited Yes Yes Yes
 BSRBRc
[British Society for Rheumatology Biologics Register] [7]
UK 2001 550 Adults Unlimited N/A Yes Yes
 PHARMACHILD (Prospective)
[Pharmacovigilance in Juvenile Idiopathic Arthritis Patients]
28 countries 2011 1450 Children 10 Yes, via JAMAR questionnaire Yes Yes
  1. aThe CARRA Registry preferentially enrols children with systemic arthritis, polyarticular JIA, new diagnosis of JIA, or initiation of treatment with methotrexate or biologic agents
  2. bBCRD and BSPAR-ETN preferentially recruit children at point of starting MTX or a biologic drug
  3. cBSRBR recruits adults starting a biologic drug. The primary focus is RA but includes adults with JIA