Bo Magnusson

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Pediatric Rheumatology

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POSTER PRESENTATION Open Access
The Swedish paediatric JIA-registry
Bo Magnusson*, Board of registry
From 21st European Pediatric Rheumatology (PReS) Congress
Belgrade, Serbia. 17-21 September 2014
Introduction
The Swedish JIA-registry started in 2009 with the primary
goal to follow all children on biologics, cytokine modula-
tors, but later expanded to all patients with or without
antirheumatic drugs. It offers care givers a tool for over-
view on patient level in clinical settings and involves
patients and parents as partners in the process. Patient
reports are given through e-tablets and summaries will be
provided as feed backs. Diagrams on treatment between
regions can be followed on line and data can be extracted
to promote quality work in the local interprofessional
team. National data can be analyzed together with official
registries with the aim to follow future morbidity and pro-
cess of care given to patients with the aim for equal care
for all patients. Eye examinations and uveitis is integrated
in the registry.
Objectives
1. Description of the registry
2. Registration rates and coverage
3. Patterns of medical treatmen
Methods
Use of web-based national registry with reports from care
givers, patients and medical records. JADAS, CHAQ,
Disabkids including the arthritis specific questions are
followed together with growth.
Results
After 5 years there are 1700 patients included and data
enough to make analyzes possible. Coverage is almost
complete but registration rates differ between regions. The
total registration rate is above 60 % for all JIA and above
90 % for patients on cytokine modulators. The figures are
calculated from prevalence date in cohort studies done
together with data from the official patient registry of care
given in Sweden for JIA and data from register for over
the counter sell of cytokine modulators. The use of cyto-
kine modulators differs from 15 up to 35 patients/100 000
between different care givers. Some of the drugs are not
approved for use in children and are given in schedules
not recommended. Guidelines for treatment are not fully
followed. Methotrexate as single treatment is used as often
as cytokine modulators. Up to 32 % of the patients are on
no antirheumatic or continuous NSAID treatment. Mean
JADAS-27 for all JIA is 15 at onset going down to 5 after
2 years and staying at that level. Most of JADAS is
explained from patient report of health and not from
active disease. Most patients have no arthritis at latest
registration. It is a challenge to improve health and not
just freedom of disease activity.
Conclusion
Registration rates and number of included patients are
high enough to make it possible to start analyzing data
from the registry. There are differences between regions in
all aspects of treatment but so far no data showing differ-
ences of outcome or health which cannot be explained by
differences in reporting data or differences in registration
rates. The registry is a tool for care givers in partnership
with patients and gives data for local quality work. There
is a need for treatment goals, key ratios and treat to target
definitions in different subgroups of JIA.
Disclosure of interest
None declared.
Published: 17 September 2014
doi:10.1186/1546-0096-12-S1-P5
Cite this article as: Magnusson and : The Swedish paediatric JIA-registry.
Pediatric Rheumatology 2014 12(Suppl 1):P5.
Paediatric Rheumatology Unit, Astrid Lindgren Children´s hospital, Karolinska
University Hospital, Stockholm, Sweden
Magnusson and Pediatric Rheumatology 2014, 12(Suppl 1):P5
http://www.ped-rheum.com/content/12/S1/P5
© 2014 Magnusson and Board of registry; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of
the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution,
and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication
waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.


The swedish paediatric JIA-registry

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The swedish paediatric JIA-registry

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