Early treatment for juvenile idiopathic arthritis (JIA) is likely the reason for most children with JIA taking part in a Canadian patient registry having inactive disease within one year of diagnosis, a study looking at this ongoing and nationwide registry reports.
The study, “A new Canadian inception cohort for juvenile idiopathic arthritis: The Canadian Alliance of Pediatric Rheumatology Investigators Registry,” was published in the journal Rheumatology.
More collaboration worldwide is needed to collect information on JIA patients, its researchers noted, as data from clinical trials and other sources may underrepresent certain JIA types and milder forms of the disease.
In recent decades, registries and inception cohorts — a group of patients followed since early in their disease — have improved researchers’ understanding of outcomes in JIA. However, maintaining such databases in the long term is often challenging, due to financial constraints and the need to continue to collect large amounts of patient data over successive follow-ups. These challenges can lead to missing data, and a drop in information collected over time.
A group of pediatric rheumatologists in Canada designed a new inception cohort aiming to increase flexibility for patients and lower costs. Their goal was also to make it easier to use in clinical practice and research.
Their Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) JIA Registry (NCT03245801) opened in 2017 to gather information on children with JIA across Canada within three months of their diagnosis. This study, which runs through 2026, is likely still enrolling up to 300 patients; contact and site information is here.
Unlike other approaches, CAPRI does not have a preset schedule for visits, the study reports. Its streamlined data collection typically requires two to four minutes per visit, significantly easing the burden on physician and families. Enrollment and annual questionnaires generally take between five and 10 minutes for the physician, and up to 15 minutes for a patient’s family.
Data quality on disease course, treatments, patient outcomes, and adverse events is monitored periodically via automated controls.
As of October 2018, researchers reported that 166 children were enrolled (61% girls) at a median of six weeks after receiving a JIA diagnosis. Their median age at diagnosis was 9.
The most common disease subtype was oligoarticular JIA, diagnosed in anti-rheumatic51% of children.
Patients were followed for a mean period of 22.4 weeks with a mean 2.5 visits per child. At enrollment, 42 participants (25%) had started treatment with a disease-modifying anti-rheumatic drug (DMARD).
The median clinical Juvenile Arthritis Disease Activity Score was 6.5 at enrollment, and median time to first achieving clinically inactive disease (CID; cJADAS score up to 1) was 24 weeks (six months).
Within one year of diagnosis, 81% of children achieved CID. This outcome was better than that seen in the ReACCh-Out study, a previous Canadian JIA study that had reported 45% of patients achieving CID within a similar period.
According to the scientists, the greater number of registry JIA children with inactive disease is likely due to earlier treatment.
Within one year of diagnosis, 70% of patients in CAPRI registry had started on a conventional disease-modifying anti-rheumatic drug, while 35% has started treatment with a biologic therapy, the researchers reported.
Overall, the risk of at least one adverse event during this first year was 48%. The most common events were nausea, vomiting, and abdominal pain. No cases of eye surgery, joint surgery, or macrophage activation syndrome had been reported.
“This streamlined and flexible registry minimizes the burden of data collection and interference with clinic operations,” the scientists wrote.
Its “main strength … is the universal inclusion of all patients with JIA shortly after diagnosis and inclusion of patient-related outcomes, such as pain and quality of life,” they added.
“Using pragmatic clinical trials and comparative effectiveness research with data from our registry and collaborating with other inception cohorts, we have a unique opportunity to help answer the questions that are most important and relevant for health-care providers and patients/families.”