title: Long-term outcome of patients with JIA treated with etanercept, results of the biologic register JuMBO.
abstract: OBJECTIVE
  To assess the outcome of adult patients with JIA who received etanercept (ETA) during childhood.
  
  
  METHODS
  JuMBO (Juvenile arthritis MTX/Biologics long-term Observation) is an ongoing prospective cohort study. It follows adult JIA patients who were formerly included in the national JIA biologic register. In JuMBO, clinical status, therapy and the occurrence of adverse events are documented every 6 months by physicians; additionally, patient-derived data are included [e.g. functional capacity and health-related quality of life (HRQoL)]. Here, data from the last available visit of patients were analysed.
  
  
  RESULTS
  Until December 2010, 346 patients with a median age of 21 years were included in JuMBO. The majority of them had polyarthritis. Seventy-eight per cent of them were still on DMARDs, 45% on ETA. The disease was inactive in about one in five patients. A restricted functional capacity was reported by 51% of participants and fatigue by 76%. The patients judged their HRQoL to be lower than a reference group from the general population, but only with regard to physical health. HRQoL correlated with the patient's perceived fatigue. Most frequently observed comorbidities in the young adults with JIA were disease related and included uveitis, IBDs and psoriasis. During the observation period, 2.1 severe infections and 1.5 new-onset autoimmune events per 100 patient-years were reported in patients on ETA, respectively.
  
  
  CONCLUSIONS
  The first data from the JuMBO register indicate an improved long-term outcome of patients with severe JIA treated in the biologic era and an acceptable safety profile of ETA.
authors.affiliation: German Rheumatism Research Centre Berlin, a Leibnitz Institute, Charitéplatz 1, 10117 Berlin, Germany. minden@drfz.de
authors.forename: Kirsten
authors.initials: K
authors.lastname: Minden
authors.forename: Martina
authors.initials: M
authors.lastname: Niewerth
authors.forename: Angela
authors.initials: A
authors.lastname: Zink
authors.forename: Eva
authors.initials: E
authors.lastname: Seipelt
authors.forename: Ivan
authors.initials: I
authors.lastname: Foeldvari
authors.forename: Hermann
authors.initials: H
authors.lastname: Girschick
authors.forename: Gerd
authors.initials: G
authors.lastname: Ganser
authors.forename: Gerd
authors.initials: G
authors.lastname: Horneff
mesh_terms: D000293:Adolescent; D000328:Adult; D018501:Antirheumatic Agents / Q000009:adverse effects / Q000627:therapeutic use*; D001171:Arthritis, Juvenile / Q000188:drug therapy*; D015331:Cohort Studies; D000068800:Etanercept; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007074:Immunoglobulin G / Q000009:adverse effects / Q000627:therapeutic use*; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life; D018124:Receptors, Tumor Necrosis Factor / Q000627:therapeutic use*; D012042:Registries; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult
chemical_list: D018501:Antirheumatic Agents; D007074:Immunoglobulin G; D018124:Receptors, Tumor Necrosis Factor; D000068800:Etanercept