Table 1 Summary of JIA registries and cohort studies
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 | 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 |