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Comparative effectiveness of Childhood Arthritis and Rheumatology Research Alliance (CARRA) treatment strategies for polyarticular juvenile idiopathic arthritis
Investigator (PI): Kimura, Yukiko
Performing Organization (PO): (Current): Hackensack University Medical Center / (551) 996-2000
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2015
Final Year: 2020
Record Source/Award ID: PCORI/CER-1408-20534
Funding: Total Award Amount: $2,738,645
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Juvenile idiopathic arthritis (JIA) affects as many as 300,000 children in the United States and is a leading cause of acquired disability in childhood. JIA is a chronic disease that has no cure and can start at any age, even infancy. More than half of children with JIA have polyarticular JIA (pJIA), a subset in which five or more joints are affected. JIA causes pain, suffering, decreased school and social activity participation, and impaired ability to do daily activities, and it can alter academic and career trajectories. JIA can cause joint damage, deformities, and growth problems in the bones and joints, which affect the whole body. It can make simple everyday tasks, such as dressing, brushing teeth, eating, and climbing stairs, challenging. Fortunately, many powerful and effective treatments now exist for JIA, but many new medications (biologics) may have side effects that are not yet understood. Patients, families, and doctors must make decisions on which medications to use without information about how they compare with one other, and when is the right time to start each one. A common dilemma persists: starting with an older, well-studied medication may avoid the need to use a biologic medication if it works well; on the other hand, if the older medication doesn't work, waiting too long to start a biologic medication may limit how well it works. We do know that the earlier an effective treatment is started, the better the child will do over the long term. In this study, three different treatment approaches started as first-line treatment for children with pJIA will be compared. By also capturing patients' pain, quality of life, medication side effects, and other important factors, we will gain a more complete picture of how the disease and its treatments affect patient and family lives. Four hundred children and their parents, with their pediatric rheumatologists, will choose from one of three treatment strategies, and they will be followed for 12 months. Information is collected about their arthritis activity and additional information (such as their pain and mobility) at routine clinic visits. The primary outcome will be arthritis activity 12 months after starting treatment. The patients' pain and mobility measured at 12 months will be studied as additional outcomes. Only patients and their families truly know how devastating pJIA can be. Patient and other stakeholder partners will work together with researchers in the STOP-JIA study to ensure a better understanding of how patient and family lives are directly affected, and how to measure these effects. They will also involve other patients and families to participate in the research and guide the researchers to maximize what is learned so that it can be used to improve all patients' lives. Information learned in STOP-JIA will then be shared with health care providers and other caregivers to improve the lives of many more children with pJIA.
MeSH Terms:
  • Arthritis, Juvenile /physiopathology
  • /*therapy
  • Biological Products /therapeutic use
  • Child
  • Comparative Effectiveness Research
  • Decision Making
  • Humans
  • Pain Management
  • Pain Measurement
  • Parents
  • Patient Education as Topic
  • Pediatrics /methods
  • /organization & administration
  • Program Development
  • Quality of Life
  • Rheumatology /*methods
  • /*organization & administration
Country: United States
State: New Jersey
Zip Code: 07601
UI: 20153561
Project Status: Ongoing
Record History: ('2017: Project extended to 2020.',)