The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) consortium was selected to receive a 2-year grant to implement a Pediatric rheumatology Learning Health System (LHS) that will work with networks in the Patient-Centered Outcomes Research Institute (PCORI) PCORnet Learning Healthcare System Collaborative.
The PARTNERS Pediatric LHS will provide support for patients with juvenile idiopathic arthritis (JIA) and their families to actively engage in care and self-management activities. JIA is a rare disease, making it difficult to study. Currently there is no cure for JIA. Recent advances in drug development have resulted in many therapies, including biologics. However, there remain many unanswered questions about how to use available therapies. While early diagnosis and initiation of treatment have proven to improve outcomes, variation exists in treatment patterns across providers, medical centers, and geographic locations.
Continue reading PARTNERS Pediatric Learning Health System: New JIA Project Focuses on Improving Outcomes for Children
As an organization, we have always supported and encouraged the active involvement of patients in their own care. Patient perspectives matter greatly when it comes to decisions being made about health care. Their voices are vital in the clinical research process as new medications are being developed and tested.
Patient perspectives play a large role in Dr. Nora Singer’s 3-year Arthritis Foundation-funded project – “Cell-based therapy in systemic onset JIA (sJIA) refractory to conventional “c” and biological “b” DMARDs”. Her project uses stem cells derived from adult cells that are designed to “reset” the immune system. The study will compare the safety and effectiveness of the stem cell treatment to conventional and biological disease-modifying antirheumatic drugs (DMARDs). Currently, stem cell therapy is experimental in the U.S. and regulated by the U.S. Food and Drug Administration (FDA), but is less regulated in other countries.
Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Nora Singer
Dr. Rae Yeung believes in collaboration and building networks to solve problems. Her current 3-year Arthritis Foundation-funded project, “Precision Decisions to STOP JIA”, is an example of that. The goal is to develop a tool that will predict treatment response to specific drugs. Dr. Yeung’s study focuses on a group of high-risk children with polyarthritis, one of the most severe forms of childhood arthritis that affects many joints and is difficult to treat.
Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Rae Yeung