Evaluation of the presentation of systemic onset juvenile rheumatoid arthritis: Data from the Pennsylvania Systemic Onset Juvenile Arthritis Registry (PASOJAR)

Edward M. Behrens, Timothy Beukelman, Lisa Gallo, Julie Spangler, Margalit Rosenkranz, Thaschawee Arkachaisri, Rosanne Ayala, Brandt Groh, Terri H. Finkel, Randy Q. Cron

Research output: Contribution to journalArticle

90 Citations (Scopus)

Abstract

Objective. To characterize the initial clinical and laboratory features of patients with systemic onset juvenile rheumatoid arthritis (soJRA) through a Web-based registry. Methods. Patients diagnosed with soJRA in the last 15 years at 3 medical centers in Pennsylvania were identified. Data were collected retrospectively using a Web-based interface in compliance with patient privacy standards. Inferential statistics were used to compare features of patients with and without macrophage activation syndrome. Results. We identified 136 patients; 88% of patients presented with arthritis (8% mono-, 45% oligo-, 47% polyarticular). The most common joints involved were the knee (68% of patients with arthritis), wrist (68%), and ankle (57%). The International League of Associations for Rheumatology criteria for systemic juvenile idiopathic arthritis (SJIA) identified only 30% of patients at presentation. Conclusion. We successfully characterized the presenting features of a relatively rare disease, soJRA, through the use of a Web-based registry. Current classification criteria for SJIA may not be particularly sensitive for diagnosis at presentation.

Original languageEnglish (US)
Pages (from-to)343-348
Number of pages6
JournalJournal of Rheumatology
Volume35
Issue number2
StatePublished - Feb 1 2008

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Juvenile Arthritis
Registries
Arthritis
Macrophage Activation Syndrome
Privacy
Rheumatology
Patient Compliance
Rare Diseases
Systemic Juvenile Rheumatoid Arthritis
Wrist
Ankle
Knee
Joints

All Science Journal Classification (ASJC) codes

  • Rheumatology
  • Immunology and Allergy
  • Immunology

Cite this

Behrens, E. M., Beukelman, T., Gallo, L., Spangler, J., Rosenkranz, M., Arkachaisri, T., ... Cron, R. Q. (2008). Evaluation of the presentation of systemic onset juvenile rheumatoid arthritis: Data from the Pennsylvania Systemic Onset Juvenile Arthritis Registry (PASOJAR). Journal of Rheumatology, 35(2), 343-348.
Behrens, Edward M. ; Beukelman, Timothy ; Gallo, Lisa ; Spangler, Julie ; Rosenkranz, Margalit ; Arkachaisri, Thaschawee ; Ayala, Rosanne ; Groh, Brandt ; Finkel, Terri H. ; Cron, Randy Q. / Evaluation of the presentation of systemic onset juvenile rheumatoid arthritis : Data from the Pennsylvania Systemic Onset Juvenile Arthritis Registry (PASOJAR). In: Journal of Rheumatology. 2008 ; Vol. 35, No. 2. pp. 343-348.
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Behrens, EM, Beukelman, T, Gallo, L, Spangler, J, Rosenkranz, M, Arkachaisri, T, Ayala, R, Groh, B, Finkel, TH & Cron, RQ 2008, 'Evaluation of the presentation of systemic onset juvenile rheumatoid arthritis: Data from the Pennsylvania Systemic Onset Juvenile Arthritis Registry (PASOJAR)', Journal of Rheumatology, vol. 35, no. 2, pp. 343-348.

Evaluation of the presentation of systemic onset juvenile rheumatoid arthritis : Data from the Pennsylvania Systemic Onset Juvenile Arthritis Registry (PASOJAR). / Behrens, Edward M.; Beukelman, Timothy; Gallo, Lisa; Spangler, Julie; Rosenkranz, Margalit; Arkachaisri, Thaschawee; Ayala, Rosanne; Groh, Brandt; Finkel, Terri H.; Cron, Randy Q.

In: Journal of Rheumatology, Vol. 35, No. 2, 01.02.2008, p. 343-348.

Research output: Contribution to journalArticle

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AU - Behrens, Edward M.

AU - Beukelman, Timothy

AU - Gallo, Lisa

AU - Spangler, Julie

AU - Rosenkranz, Margalit

AU - Arkachaisri, Thaschawee

AU - Ayala, Rosanne

AU - Groh, Brandt

AU - Finkel, Terri H.

AU - Cron, Randy Q.

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N2 - Objective. To characterize the initial clinical and laboratory features of patients with systemic onset juvenile rheumatoid arthritis (soJRA) through a Web-based registry. Methods. Patients diagnosed with soJRA in the last 15 years at 3 medical centers in Pennsylvania were identified. Data were collected retrospectively using a Web-based interface in compliance with patient privacy standards. Inferential statistics were used to compare features of patients with and without macrophage activation syndrome. Results. We identified 136 patients; 88% of patients presented with arthritis (8% mono-, 45% oligo-, 47% polyarticular). The most common joints involved were the knee (68% of patients with arthritis), wrist (68%), and ankle (57%). The International League of Associations for Rheumatology criteria for systemic juvenile idiopathic arthritis (SJIA) identified only 30% of patients at presentation. Conclusion. We successfully characterized the presenting features of a relatively rare disease, soJRA, through the use of a Web-based registry. Current classification criteria for SJIA may not be particularly sensitive for diagnosis at presentation.

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