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
We recently gave approximately $160,000 toward childhood arthritis research in the form of research grants. The grants are funded through the Childhood Arthritis and Rheumatology Research Alliance (CARRA); small grants were given to pediatric rheumatologists and fellows small grant research awards were given to third year fellowship students.
Continue reading Spring 2018 Childhood Research Grants Announced
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) recently announced award recipients for the CARRA-Arthritis Foundation 2018 large and small grant awards. Grants are awarded to investigators with projects that positively impact the pediatric rheumatology scientific community. Funded by the Arthritis Foundation, a total of almost $240,000 was awarded for this year’s grants. Alpha Omicron Pi Foundation (AOII), a funding partner, funded three of the grants noted below.
“These grants are important because of the rarity of these patients, “explained Guy Eakin, PhD, senior vice president of Scientific Strategy. “Research on rare conditions is difficult, and required broad networks like the partnership between the Arthritis Foundation and CARRA to launch great ideas, then turn them into active research programs. We’re very proud to work in partnership with CARRA to see these and other major scientific initiatives moving forward.”
Of the 9 grants awarded, 5 are related to systemic lupus erythematosus (SLE) studies, 3 are related to juvenile idiopathic arthritis (JIA) studies, and 1 looks at tracking localized disease with mobile apps.
LARGE GRANT AWARDEES
Two applications were selected to receive $50,000 awards:
- Kiana Johnson, East Tennessee State University: Healthcare Transition Readiness and Health Self-management among youth with Juvenile Systemic Lupus (funded by AOII)
- Kathleen O’Neil, Indiana University School of Medicine: The Relationship Between Changes in Adipokine Levels and Disease Activity in Pubertal Children with SLE
Seven new small grants of up to $25k each were awarded. Congratulations to:
- Fatima Barbar-Smiley, Nationwide Children’s Hospital: Immunogenicity of pneumococcal vaccination and impact on nasopharyngeal pneumococcus colonization in patients with childhood onset systemic lupus erythematosus
- Ingrid Goh, The Hospital for Sick Children: Patient and Caregiver Engagement in Research (PACER): Approaching for research on date of rheumatic diagnosis—a pilot project (funded by AOII)
- Joyce Hui-Yuen, Cohen Children’s Medical Center: Feasibility of Conducting Epigenetic Analysis in Pediatric Lupus B Cells
- Suzanne Li, Hackensack University Medical Center: Tracking Disease Activity in Juvenile Localized Scleroderma with a Mobile App (funded by AOII)
- Melissa Oliver, Indiana University, Riley Hospital for Children: Clinical disease manifestations associated with anti-TNF non-response in Juvenile Spondyloarthropathy
- Victoria Werth, The University of Pennsylvania: Evaluation of the reliability and validity of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) in pediatrics
- Leandra Woolnough, Texas Scottish Rite Hospital for Children: Longitudinal Musculoskeletal Ultrasound Assessment in Juvenile Idiopathic Arthritis
CARRA will continue with the large grants program in 2019. The deadline for the next round of large grants will be March 1, 2019. Visit the CARRA website for details on other funding opportunities.
“Why did my child get arthritis?” This parent-driven question is at the heart of Dr. Jim Jarvis’s juvenile idiopathic arthritis (JIA) Arthritis Foundation-funded project, “Interplay between genetics and epigenetics in polyarticular JIA”.
“This is less about an illness driven by inherited genes and more about how the environment affects gene expression,” explained Dr. Jarvis. “It’s been shown that only about 30 percent of the risk for developing JIA can be attributed to gene variations.”
Continue reading Researchers on the Path to a Cure – Spotlight on Dr. James Jarvis
Champion of Yes has come to mean different things to different people. To many, it means refusing to let arthritis win – to stand up, push back and say, “Enough is enough. I won’t let arthritis stop me or anyone else from living life to its fullest!”
Continue reading Winterhoff Arthritis Scholarship Goes National – Eight 2017 Recipients Announced
Each year at this time, we commemorate the estimated 300,000 children and their families in the United States who face the everyday challenges of living with juvenile arthritis (JA) and related diseases. Juvenile arthritis is an umbrella term used to describe the many autoimmune and inflammatory conditions or pediatric rheumatic diseases that can develop in children and teens.
The various types of juvenile arthritis share many common symptoms, like pain, joint swelling, redness and warmth, but each type of JA is distinct and has its own unique characteristics and how it affects the body. Continue reading July Is National Juvenile Arthritis Awareness Month