Juvenile Idiopathic Arthritis (JIA)
Not long ago, a child’s JIA treatment depended almost entirely on which doctor happened to see them.
Different doctors. Different approaches. Different outcomes.
Juvenile idiopathic arthritis is a chronic autoimmune disease that can affect a child’s joints, growth, vision, and whole quality of life, and for many children it lasts a lifetime.
CARRA exists because no single hospital sees enough of these children to answer the hard questions alone. We link pediatric rheumatologists across dozens of institutions into one network, so a child with JIA gets the whole field’s expertise instead of one doctor’s best guess.
CARRA changed that. We built the largest ongoing observational pediatric rheumatology registry in North America, a shared resource that turns each child’s experience into evidence that helps the next child.
16,000+
Children followed over time in the CARRA Registry
70+
Research sites across North America
85%
Of expenses are for programs and services
7
JIA workgroups, from uveitis and TMJ to inactive disease and long-term outcomes
1,500+
Investigators & coordinators
100+
Investigators leading Registry studies
What your gift funds
Four studies changing how children with JIA are treated
These are running now. Not concepts, but active work with published results and children enrolled.
Published
STOP-JIA
Several effective biologics are approved for polyarticular JIA, but nobody knew whether using them first made a real difference. STOP-JIA compared starting a biologic early against beginning with methotrexate and stepping up only if it failed.
Following nearly 300 children for three years, more children who started methotrexate and a biologic together reached remission.
Pending publication
LIMIT-JIA
A first-of-its-kind effort to stop arthritis from spreading before it takes hold, testing whether starting treatment right after diagnosis prevents limited JIA from extending to more joints.
Parents are on the research team, not just in it. Patient partners helped shape the study alongside the investigators.
Results reported
FROST
Systemic JIA, also called Still’s disease, is the most severe form, where children get arthritis plus fevers, rash, and sometimes organ involvement. FROST compared four real first-line treatment plans.
About 57% of children reached clinically inactive disease with no steroids by nine months, and roughly three quarters reached very low disease activity. Starting a biologic first is now the most common approach.
ACTION-JIA
Builds on STOP-JIA to support broader use of consensus treatment approaches across CARRA sites.
What we learn in research reaches children in clinic.
Why we’re different
Families don’t just participate in the research. They start it.
Most research organizations study families. CARRA builds the research with them, and more than once a parent’s question has become a funded study.
That is the journey your gift pays for: a question, a study, a finding, a change in how children are treated.
From evidence to approved medicines
CARRA doesn’t approve drugs. We build the evidence behind approvals.
When pediatric clinical trials became harder to conduct, CARRA brought together FDA and EMA regulators, industry, clinicians, and families to close the evidence gap. That work, along with our strong partnership with the Arthritis Foundation, helped open the door to FDA-approved therapies that are easier for families to access and more likely to be covered by insurance.
The evidence that opened the door
45%
had chronically uncontrolled disease despite trying two or more biologics
15%+
had received a biologic not approved for their disease
15 pediatric drug indication approvals since 2020
The problem
Questions we still can’t answer
Why does diagnosis still take so long?
Which treatment will work for this child?
Why does disease persist despite multiple therapies?
The solution
The CARRA Registry: the infrastructure to answer them
CARRA is modernizing the Registry & Biorepository into one real-world evidence platform, bringing together:
- Real-world clinical data
- Biomarkers
- Biospecimens, analyzed on arrival
- Genomic information
- Long-term outcomes
More representative data. Faster access. Better research.
Make your gift
Your gift turns one family’s hardest questions into answers for every family.
For a child with JIA, every year a discovery is delayed is a year of childhood spent in pain. The questions these families live with are answerable. Your gift helps important research questions get answered to make a big difference in the lives of children with rheumatic diseases.
The goal isn’t more data. It’s better answers for the next child.
Talk with our team
Have questions or want to talk it through? I’d love to hear from you.
Caitlin Williams
Director of Individual and Foundation Giving
CARRA is a 501(c)(3) nonprofit. 85% of expenses are for programs and services.