Usually, physicians develop treatment guidelines for diseases – such as diabetes or various cancers – based on mountains of data. But in the case of sJIA, those mountains don’t exist.

Dr. Wallace says because there isn’t enough data, no one can determine which treatments are the best; information has to come from the field. “Everyone has an opinion and a particular method and approach, but none of it is evidence-based,” she says.

To arrive at the four treatment plans, the authors collected information about how most pediatric rheumatologists treat sJIA. They then tried to standardize the information using “consensus methodology” so that “everyone who participated felt that what was being recommended in each of the plans was close to normal practice,” explains Dr. Kimura.

The advantage of establishing the treatment plans by consensus within the CARRA network is that it will increase the likelihood that pediatric rheumatologists will follow them.

The consensus process, says Dr. Wallace, is the same process the Children's Oncology Group used to standardize and improve treatment for childhood acute leukemia decades ago.

“Every child who received cancer treatment was entered in a database, and the results of one treatment method were compared with those of another method and then another in a [repetitive] approach in order to gather evidence for the best standardized therapies for each kind of leukemia,” she explains.

“As a result, the treatment approaches to childhood cancer evolved in a data-driven way, and 80 percent of children with acute leukemia now have a five-year disease-free survival rate.”

CARRA also keeps a registry, a database of patients with childhood rheumatic diseases, that will be used to collect data for sJIA research as well as for other projects, including upcoming consensus treatment plans for another type of JIA called pediatric polyarticular arthritis.

The Arthritis Foundation will help fund the creation of pilot programs for the sJIA treatment plans at select CARRA-associated university and pediatric medical centers.

“This will help us see how well the plans perform, how easy they are to use and what problems arise when pediatric rheumatologists try to use them as part of daily clinical practice,” Dr. Kimura says.

Once any clinical problems have been solved, the goal is to extend the pilot programs to all of the sites in the CARRA registry. Dr. Kimura says, “We want to gather information on many more patients with sJIA so we can compare the effectiveness of different treatments over time.”

Dr. Wallace stresses that the consensus treatment plans are not just for CARRA physicians. “They are intended for all providers caring for children with sJIA, including international pediatric rheumatologists and even adult rheumatologists,” Dr. Wallace says. “We want to see all physicians treating childhood arthritis more uniformly. A culture of research is key because it's the only way we can keep moving forward and improve the care that patients receive.”