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Long-term outcome of two cohorts of children with juvenile rheumatoid arthritis

by admin | Feb 21, 2016 | Juvenile Idiopathic Arthritis (JIA) |

Principal Investigator: Beth Gottlieb, MD, MS, Schneider Children’s Hospital, New Hyde Park, NY

This is a prospective multicenter observational study. Currently, 23 centers in the United States and Canada participate in this study. This study follows a cohort of JRA patients collected from 1996-99 in a study conducted by Dr. Suzanne Bowyer in Indiana and a new cohort of JRA patients currently being enrolled and followed. Enrollment into the new cohort began in July 2001 when funding was granted through the Arthritis Foundation.

Specific Aims

  1. To continue to follow the cohort of 473 children with JRA already assembled from pediatric rheumatology centers across the United States as a result of previous arthritis foundation funding provided to this group. These patients have been entered into a large database and are being followed at one-year intervals in order to record their disease progression, medication use, laboratory and radiographic parameters and functional status.
  2. To enter approximately 500 newly diagnosed JRA patients from the same pediatric rheumatology centers into a second database over a 4 year period in order to describe disease activity, medication use, laboratory and radiographic parameters and functional status at diagnosis and at 1 year intervals.  This cohort will expand on the original cohort (see number 1 above) by including children diagnosed in an era of new treatments – the biologic response modifiers – which are likely to change the long-term outcome in children with JRA.
  3. To attempt to identify clinical, serological or treatment markers that predict, a mild or aggressive course, early in the disease process.
  4. To describe the current patterns of use of methotrexate and newer biologic response modifiers in children with JRA in a practice setting and to compare the functional outcome of children treated with these medications to that of children not taking them.
  5. To prospectively study the occurrence of medication side effects in this population.

Patients are considered for inclusion into the study if they are diagnosed with JRA according to ACR criteria and have not been treated with appropriate medications for 6 weeks or longer. Baseline data collected includes: date of onset of arthritis, subtype of arthritis, joint counts, extra-articular manifestations, lab and x-ray results (when performed), and a parent’s functional assessment (the CHAQ) and pain assessment. Data is then collected on a yearly basis. Yearly data collection includes: subtype of arthritis, joint counts, requirement for PT/OT, social work intervention, splints or other assistive devices, extra-articular manifestations, lab and x-ray results (when performed), medications used in the past year and any associated side effects, and a parent’s functional assessment (the CHAQ) and pain assessment.

This study will represent the largest cohorts of patients with JRA ever assembled in North America for a clinical study and will provide reliable information about the functional outcome of children with JRA who were diagnosed and treated in the 1990’s and beyond. This study will systematically assess the outcome of JRA patients treated both before and after the introduction of the new biologic response modifiers. The study will emphasize functional ability and will allow a comparison of the outcome of patients treated before and after the introduction of these treatment options. It will serve as a valuable resource for the pediatric rheumatology community, will generate hypotheses for future study and could potentially be continued to give long-term (15-20 years) outcome results on these two cohorts of patients as well.