Project ICON – Inception cohort of newly-diagnosed patients with juvenile idiopathic arthritis (ICON JIA)

Basic data

Acronym:
ICON
Title:
Inception cohort of newly-diagnosed patients with juvenile idiopathic arthritis (ICON JIA)
Duration:
01/09/2015 to 31/08/2021
Abstract / short description:
Juvenile idiopathic arthritis (JIA) is the most common chronic inflammatory rheumatic disease in childhood and adolescence. JIA carries a high risk of permanent disability and impaired quality of life. In addition, JIA is associated with an enormous economic burden. The disease course follows an unpredictable pattern, even within individual JIA subtypes. Reliable outcome predictors, which could assist in making initial risk-adapted treatment choices, are still lacking. Moreover, it´s unclear whether the implementation of new treatment strategies (including biologic drugs) has led to an improved long-term outcome of patients, with less pain and functional limitation, less damage, a better participation and a higher quality of life.
The aim of this prospective, controlled, observational, longitudinal study of patients with early JIA (ICON) is therefore to determine and update the prognosis of JIA and associated uveitis under current therapeutic conditions. Since its start in September 2009, 975 cases with early JIA and 489 controls have been included in ICON at 11 rheumatology sites in seven Federal States in Germany. These patients are regularly examined by paediatric rheumatologists and ophthalmologists. Laboratory analyses are done concomitantly and include both proteomic and genomic approaches. Serum and DNA samples collected are stored in biobanks for further investigations. The demographic, clinical, psychosocial, socioeconomic, and laboratory parameters assessed at disease onset and during the disease course are used to describe the course, burden and prognosis of JIA. Parameters from disease onset are evaluated for their value in predicting an unfavorable disease course, in terms of persisting active disease, disease damage, and impaired quality of life.
The information obtained will assist children, parents and clinicians to set realistic treatment goals. Moreover, through the knowledge of risk factors for persistent disease activity or poor quality of life, this study may lead to a major step forward in patient care and resource allocation, as treatment could then be better adjusted to meet the patient´s actual needs.
Keywords:
juvenile idiopathische Arthritis (JIA)
Lebensqualität
neuen Therapiestrategien
prospektive standardisierte Beobachtung
Krankheitsverlauf
klinische, immunologische, psychosoziale und sozioökonomische Parameter
Prognose

Involved staff

Managers

Faculty of Medicine
University of Tübingen

Contact persons

Hansmann, Sandra
Faculty of Medicine
University of Tübingen

Local organizational units

Paediatrics Department I and Polyclinic
University Children’s Hospital - Department of Paediatrics
Hospitals and clinical institutes, Faculty of Medicine
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