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ICON

Inception Cohort of newly diagnosed patients with juvenile idiopathic arthritis

The aim of the project was to form a cohort of children and adolescents with newly diagnosed juvenile idiopathic arthritis (JIA) and peers for comparison. Through the prospective, standardized observation of the patient group, new insights were gained into the course of the disease, prognosis, indicators of disease progression, the health care situation, and socioeconomic aspects of JIA. The knowledge gained will help to further improve the care of JIA patients and to minimize long-term consequences of the disease.

Laufzeit

2009-2022

Head of project

Prof. Dr. med. Kirsten Minden

Programme Area 2, PA 2 – Epidemiology and Health Services Research

Group leader: Paediatric Rheumatology and Health services research

Liaison working group with Charité - Dep. of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine

minden@drfz.de

Current projects

Data from the ICON early cohort are currently being used to

  • estimate the health care costs of JIA (PAVE)
  • examine the familial burden of the disease (PAVE)
  • analyze the utilization of and satisfaction with health care services over time (DZKJ)
  • to determine the progression of health and risk behavior in adolescents with juvenile idiopathic arthritis compared to controls (DZKJ)
  • to compare the life satisfaction of adolescents with JIA with that of age-appropriate controls 
  • to record the emotional strain and health-related quality of life of children and adolescents with juvenile idiopathic arthritis over the course of the disease and to determine associated factors
  • to examine differences between the perception of disease activity in JIA by children, parents and doctors and to identify factors that explain these differences (DZKJ)
  • to determine drop-out rates over time and to understand the reasons for them (DZKJ)

Selected Publications

1. What is the short- and long-term prognosis for a child with JIA today?
Gehe zum Ende des Sliders
Milatz F, Pedersen MJ, Klotsche , Liedmann I, Martina Niewerth M, Hospach A, Horneff G, Klein A, Weller-Heinemann F, Foeldvari I, Kallinich T, Haas JP, Windschall D, Dressler F, Foell D, Kuemmerle-Deschner JB, Minden K, Minden K.

Physical (in)activity and screen-based media use of adolescents with juvenile idiopathic arthritis over time – data from a German inception cohort.

Pediatr Rheumatol Online J. 2024 Oct 21:22(1):93. Open Access
Sengler C.

Neue Therapiewege, bessere Outcomes? : Ergebnisse aus Inzeptionskohorten fur Patienten mit juveniler idiopathischer Arthritis. [New therapy approaches, better outcomes? : Results from inception cohorts for patients with juvenile idiopathic arthritis].

Z Rheumatol. 2019 May 24:78(7):610-619.
Sengler C, Klotsche J, Niewerth M, Liedmann I, Föll D, Heiligenhaus A, Ganser G, Horneff G, Haas JP, Minden K.

The majority of newly diagnosed patients with juvenile idiopathic arthritis reach an inactive disease state within the first year of specialised care: data from a German inception cohort.

RMD Open. 2015 Dec 08:1(1):e000074. Open Access
Listing M, Mönkemöller K, Liedmann I, Niewerth M, Sengler C, Listing J, Foell D, Heiligenhaus A, Klein A, Aklein A, Horneff G, Ganser G, Haas JP, Klotsche J, Minden K.

The majority of patients with newly diagnosed juvenile idiopathic arthritis achieve a health-related quality of life that is similar to that of healthy peers: results of the German multicenter inception cohort (ICON).

Arthritis Res Ther. 2018 May 30:20(1):106. Open Access
2. Is the JIA outcome predictable?
Gehe zum Ende des Sliders
Straalen JV, Kearsley-Fleet L, Klotsche , De Roock S, Minden K, Heiligenhaus A, Hyrich KL, Boer JD, Lamot L, Olivieri AN, Gallizzi R, Smolewska E, Faugier E, Pastore S, Hashkes PJ, Herrera CN, Emminger W, Consolini R, Wulffraat NM, Ruperto N, Swart JF.

Development and external validation of a model predicting new-onset chronic uveitis at different disease durations in juvenile idiopathic arthritis.

Arthritis Rheumatol. 2022 Aug 23 Open Access
Haasnoot AJW, Schilham MW, Kamphuis S, Hissink Muller PCE, Heiligenhaus A, Foell D, Minden K, Ophoff RA, Radstake TRDJ, Den Hollander AI, Reinards THCM, Hiddingh S, Schalij-Delfos NE, Hoppenreijs EPAH, van Rossum MAJ, Wouters C, Saurenmann RK, van den Berg JM, Wulffraat N, Ten Cate R, de Boer JH, Pulit SL, Kuiper JJW.

Identification of an Amino Acid Motif in HLA-DRbeta1 That Distinguishes Uveitis in Patients With Juvenile Idiopathic Arthritis.

Arthritis Rheumatol. 2018 May 29:70(7):1155-1165.
3. What influence does the occurrence of uveitis have on the outcome and in particular on the quality of life of the affected children and adolescents?
Gehe zum Ende des Sliders
Walscheid K, Klotsche , Tappeiner C, Niewerth-Liepold , Foell D, Minden , Heiligenhaus A.

Adherence to ophthalmological screening recommendations and course of uveitis in children with juvenile idiopathic arthritis: data from the Inception Cohort of Newly diagnosed patients with JIA (ICON-JIA) study.

Clin Exp Rheumatol. 2020 Feb 19:38(4):792-798.
Heiligenhaus A, Klotsche J, Tappeiner C, Sengler C, Niewerth M, Liedmann I, Hoeft S, Walscheid K, Lavric M, Foell D, Minden K.

Predictive factors and biomarkers for the 2-year outcome of uveitis in juvenile idiopathic arthritis: data from the Inception Cohort of Newly diagnosed patients with Juvenile Idiopathic Arthritis (ICON-JIA) study.

Rheumatology (Oxford). 2019 Jun 01:58(6):975-986. Open Access
Tappeiner C, Klotsche J, Sengler C, Niewerth M, Liedmann I, Walscheid K, Lavric M, Foell D, Minden K, Heiligenhaus A.

Risk Factors and Biomarkers for the Occurrence of Uveitis in Juvenile Idiopathic Arthritis: Data From the Inception Cohort of Newly Diagnosed Patients With Juvenile Idiopathic Arthritis Study.

Arthritis Rheumatol. 2018 May 06:70(10):1685-1694. Open Access
4. Are biomarkers such as S100 proteins and cytokine profiles suitable for predicting the course of the disease?
Gehe zum Ende des Sliders
Sengler C, Zink J, Klotsche J, Niewerth M, Liedmann I, Horneff G, Kessel C, Ganser G, Thon A, Haas JP, Hospach A, Weller-Heinemann F, Heiligenhaus A, Foell D, Zink A, Minden K.

Vitamin D deficiency is associated with higher disease activity and the risk for uveitis in juvenile idiopathic arthritis – data from a German inception cohort.

Arthritis Res Ther. 2018 Dec 13:20(1):276. Open Access
Ombrello MJ, Arthur VL, Remmers EF, Hinks A, Tachmazidou I, Grom AA, Foell D, Martini A, Gattorno M, Özen S, Prahalad S, Zeft AS, Bohnsack JF, Ilowite NT, Mellins ED, Russo R, Len C, Hilario MOE, Oliveira S, Yeung RSM, Rosenberg AM, Wedderburn LR, Anton J, Haas JP, Rosen-Wolff A, Minden K, Tenbrock K, Demirkaya E, Cobb J, Baskin E, Signa S, Shuldiner E, Duerr RH, Achkar JP, Kamboh MI, Kaufman KM, Kottyan LC, Pinto D, Scherer SW, Alarcon-Riquelme ME, Docampo E, Estivill X, Gul A, Langefeld CD, Thompson S, Zeggini E, Kastner DL, Woo P, Thomson W.

Genetic architecture distinguishes systemic juvenile idiopathic arthritis from other forms of juvenile idiopathic arthritis: clinical and therapeutic implications.

Ann Rheum Dis. 2017 May 01:76(5):906-913. Open Access
5. What economic burden does JIA place on those affected and on society? 6. Are there deficits in care with prognostic relevance?
Heinrich-Rohr M, Mönkemöller K, Martina Niewerth M, Sengler C, Liedmann I, Kallinich T, Horneff G, Windschall D, Haas JP, Dressler F, Foeldvari I, Weller-Heinemann F, Hospach T, Kuemmerle-Deschner J, Föll D, Klotsche , Minden K.

Consumer perspective on healthcare services for juvenile idiopathic arthritis: results of a multicentre JIA inception cohort study.

Clin Exp Rheumatol. 2021 Mar 30

Team

Projekt coordination
Cindy Doerwald
Martina Niewerth

Scientists
Jens Klotsche
Claudia Sengler
Miriam Listing

Doctoral candidate
Sabine Kirchner, Ewelina Türk, Meike Storms, Pascale Kurt, Julian Zink, Annalena Hauffe, Theresa Grunefeld

Das Projekt wurde gemeinsam mit der Augenabteilung am St. Franziskus Hospital in Münster und der Klinik für Pädiatrische Rheumatologie und Immunologie in Münster durchgeführt. Der Verbund kooperierte primär mit 11 kinderrheumatologischen Zentren. Im Verlauf kamen noch etwa 180 nicht primär involvierte pädiatrisch- und internistisch-rheumatologische Einrichtungen und etwa 400 augenärztlichen Einrichtungen hinzu.

Aktuelle Vorhaben

 

Daten der ICON-Frühkohorte werden derzeit genutzt, um

  • die Krankheitskosten der JIA zu schätzen (PAVE)
  • die familiäre Belastung durch die Erkrankung zu untersuchen (PAVE)
  • die Inanspruchnahme von und Zufriedenheit mit Versorgungsleistungen über die Zeit zu analysieren (DZKJ)
  • Verläufe von Gesundheits- und Risikoverhalten bei Jugendlichen mit juveniler idiopathischer Arthritis im Vergleich zu Kontrollen zu ermitteln (DZKJ)
  • die Lebenszufriedenheit Jugendlicher mit JIA mit jener altersentsprechender Kontrollen zu vergleichen
  • die emotionale Belastung und gesundheitsbezogene Lebensqualität von Kindern und Jugendlichen mit juveniler idiopathischer Arthritis im Krankheitsverlauf zu erfassen und assoziierte Faktoren zu ermitteln
  • Unterschiede zwischen der Wahrnehmung der Krankheitsaktivität bei der JIA durch Kinder, Eltern und Ärzte zu untersuchen und Faktoren zu identifizieren, die diese Unterschiede erklären (DZKJ)
  • Drop-out-Raten über die Zeit zu ermitteln und die Gründe dafür zu verstehen (DZKJ)

AG Minden

Kinder- und Jugendrheumatologie
DRFZ Kinder- und Jugendrheumatologie Arbeitsgruppe Minden