Home > Research Projects > JuMBO (Juvenile arthritis MTX/Biologics long-term Observation)
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JuMBO (Juvenile arthritis MTX/Biologics long-term Observation)

Since 2007, the JuMBO registry has been investigating the long-term effects of novel rheumatologic therapies in patients diagnosed with juvenile idiopathic arthritis (JIA) during childhood. As a follow-up registry to the BiKeR registry (headed by Prof. Dr. Horneff, St. Augustin), JuMBO monitors individuals after they transition out of pediatric rheumatologic care into adulthood.
The study focuses on the safety and effectiveness of new targeted disease-modifying antirheumatic drugs (DMARDs), as well as the long-term prognosis of JIA. Through comprehensive scientific documentation, involving over 400 rheumatology practices, outpatient clinics, general practitioners, and orthopedic institutions, data is collected semi-annually on current therapies, disease activity, joint assessments, and adverse events.
Participants also provide information on their general health status, quality of life, and disease burden, as well as on pregnancies, surgeries, and hospitalizations. Additionally, data on education, employment, and absenteeism are gathered. Through this continuous and detailed data collection, the JuMBO registry provides valuable insights into the optimal care and management of young adults living with JIA.

Laufzeit

seit 01.04.2007

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

JuMBO– More than 2,100 young adults are being accompanied on their journey.

Who takes part in JuMBO?

The average participant in the JuMBO study is 23 years old, and about two-thirds are female. The majority have polyarthritis, while one-third have spondyloarthritis. Many are still in school or vocational training, while more than a quarter are already employed.

Informationen für Studienteilnehmer:innen

Selected Findings

Improved Disease Control and Higher Quality of Life

Due to the earlier and more widespread use of modern antirheumatic therapies, juvenile idiopathic arthritis (JIA) has become more manageable than ever before. Over the past 15 years, the proportion of patients with inactive disease in adulthood has doubled. Among the current JuMBO study participants, the disease is inactive or shows minimal activity in nearly 90% of cases. Nevertheless, pharmacological treatment remains necessary for many individuals. Our data indicate that following the discontinuation of methotrexate (MTX), approximately 50% of patients experienced a disease relapse. This rate increases to 75% among those who discontinued biologic therapies. Consequently, any adjustment or tapering of treatment should always be conducted in close consultation with the treating physician (references). Encouragingly, if disease activity recurs and DMARD therapy is reinitiated, the treatment response is generally favorable: approximately 70% of patients regain inactive disease status within one year.
Articel

Timing of Therapy Initiation as a Key Determinant of Treatment Outcomes

Articel
Findings from the JuMBO study underscore the critical importance of timely therapy initiation for successful treatment outcomes. The data indicate that the earlier an effective therapy is introduced, the greater the probability of achieving drug-free remission in adulthood.

50 %

Thanks to improved therapies, 50% of patients achieve inactive disease in adulthood.

90 %

Nearly 90% reach either inactive or minimally active disease status.

1 %

Only 1% of patients require joint replacement in early adulthood—a figure that has significantly declined since 2007.

Pregnancy and the Management of JIA

To date, there is limited knowledge regarding pregnancy in women with juvenile idiopathic arthritis (JIA) and the safety of antirheumatic therapies during pregnancy and breastfeeding. For this reason, the JuMBO study systematically documents all reported pregnancies and has already recorded over 400 cases. Analyses of more than 150 pregnancies in women with JIA and approximately 40 pregnancies of female partners of affected men reveal that only about half of the pregnancies were planned.

Pregnancy terminations were more frequent among women undergoing DMARD therapy compared to those not receiving these medications. However, no significant differences in birth outcomes were observed between pregnancies with and without DMARD treatment. Women with JIA had a higher rate of cesarean deliveries and a slightly increased rate of preterm births compared to healthy women. Notably, disease activity remained stable or even showed a slight decrease during pregnancy.

Thanks to advances in JIA therapy, most women affected by the disease are now able to fulfill their desire to have children. Since certain medications may affect fertility or pose risks to both mother and child, it is essential that any planned pregnancy be discussed early with the treating rheumatologist to allow for timely adjustments in medication if necessary.

Articel

Members

Projekt coordination
Cindy Doerwald
Ina Liedmann

Scientist
PD Jens Klotsche

Medical Data Manager
Nadine Grösch

PhD Student
Laura Conrad

Over 400 rheumatology practices and outpatient clinics, as well as general practitioners and orthopedic facilities, are participating in the research project.

  • 163 adult rheumatology practices

  • 14 pediatric rheumatology centers

  • 11 general or orthopedic practices

The JuMBO research project is supported by a scientific advisory board.

Informational Flyers and Scientific Posters

DGKJ/GKJR 2020, Berlin
DGRh/GKJR 2019, Dresden
ACR 2018, Chicago
DGRh 2017, Stuttgart
JuMBO-Flyer

Key Publications

Gehe zum Ende des Sliders
Vollbach K, Tenbrock K, Wagner N, Horneff G, Klein A, Foeldvari I, Haas JP, Aries P, Gauler G, Striesow F, Hoff P., Scholz CJ, Tatsis S, Seipelt E, Klotsche , Minden K.

Outcome of adult patients with JIA treated with the biosimilar Benepali(®): results of the biologic register JuMBO.

Arthritis Res Ther. 2022 Dec 13;24(1):271. doi: 10.1186/s13075-022-02968-7. PMID: 36514116; PMCID: PMC9746218.
Kearsley-Fleet L, Klotsche J, Straalen JW, Costello W, D'Angelo G, Giancane G, Horneff G, Klein A, Láday M, Lunt M, de RS, Ruperto N, Schoemaker C, Vijatov-Djuric G, Vojinovic J, Vougiouka O, Wulffraat NM, Hyrich KL, Minden K, Swart JF.

Burden of comorbid conditions in children and young people with juvenile idiopathic arthritis: a collaborative analysis of 3 JIA registries.

Rheumatology (Oxford). 2022 May 30;61(6):2524-2534.

AG Minden

Paediatric Rheumatology and Health Services Research