CAPRI National Juvenile Idiopathic Arthritis Registry

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeUp to 18
SponsorUniversity of British Columbia

About this trial

Juvenile Idiopathic Arthritis (JIA) is a disorder of unknown cause characterized by chronic inflammation of the joints and other organs. It affects about 1 in a 1000 Canadian children and if untreated it can produce lifelong disability. The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) includes most pediatric rheumatologists in Canada. They have successfully collaborated for the past 20 years producing groundbreaking research on the modern course and outcomes of JIA. The CAPRI JIA Registry is an ongoing universal registry of Canadian children with JIA that collects longitudinal data on disease course, outcomes and adverse events to inform healthcare decisions and to gain new insights into the disease and its treatment.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

All patients newly diagnosed with JIA within the last 3 months

All patients who participated in the original ReACCh-Out study

LEAP study patients from 'newly diagnosed' and 'ReACCh-Out' cohorts who have completed their two year follow up in LEAP

Disqualifiers

Patients with an unconfirmed JIA diagnosis

Patients diagnosed with JIA more than 3 months prior to the clinic visit, who were not followed in LEAP and /or ReACCh-Out studies.

If the family as a whole is unable to answer questionnaires in English or French

Trial population

Pediatric rheumatology clinic patients at study sites

Trial design

Design model

Cohort

Time perspective

Prospective

Treatments tested in this trial

Not listed

Trial groups

No trial groups listed

Trial outcomes

Primary outcomes

1

Proportion of Children with Clinical inactive disease

This is an accepted validated composite measure requiring all of the following: No active joints, no extra-articular manifestations, a physician global assessment of disease activity of less than 1, morning stiffness of 15 min or less, and normal inflammatory markers (ESR or CRP).

Time frame
At one year

Secondary outcomes

1

Juvenile Arthritis Disease Activity Score

This is an accepted validated measure composed of the sum of physician global assessment, parent global assessment and up to 10 active joints.

Time frame
One year
2

Pain intensity

Severity of arthritis pain in the last week, from 0 to 10

Time frame
One year
3

Juvenile Arthritis Quality of Life Questionnaire

Composite measure of quality of life with total of 72 items, score from 1 (best) to 7 (worst) quality of life.

Time frame
One year
4

Childhood Health Assessment Questionnaire Disability Index

Composite measure of functional disability, score from 0 (no disability) to 3 (severe disability)

Time frame
One year

Other outcomes

Sponsors and contacts

Click on the lead sponsor to view all of their trials.

University of British Columbia

Lead sponsor

Children's Hospital of Eastern Ontario

Collaborator

The Hospital for Sick Children

Collaborator

IWK Health Centre

Collaborator

London Health Sciences Centre

Collaborator

Royal University Hospital Foundation

Collaborator

University of Manitoba

Collaborator

University of Calgary

Collaborator

Alberta Children's Hospital

Collaborator

Memorial University of Newfoundland

Collaborator

McMaster University

Collaborator

McMaster Children's Hospital

Collaborator

McGill University Health Centre/Research Institute of the McGill University Health Centre

Collaborator

Université de Montréal

Collaborator

Laval University

Collaborator