Details and Information
PARTNERS is comprised of multiple partnering organizations. Visit these web pages to learn more about the network.
- PARTNERS on Cure JM Foundation
- PARTNERS on Arthritis Foundation
- PARTNERS on LUPUS Foundation of America
- PARTNERS on Pediatric Rheumatology Care & Outcomes Improvement Network
Areas of Focus: Pediatric Rheumatic Disease
Population Characteristics: Pediatrics
Partnering Organizations: CureJM Foundation, Lupus Foundation of America, Arthritis Foundation, Childhood Arthritis and Rheumatology Research Alliance (CARRA), and Pediatric Rheumatology Care and Outcomes Improvement Network
Contract Organization: Duke University
Contact: [email protected]
Principal Investigator: Laura Schanberg, MD
The PARTNERS team works to improve outcomes and quality of life for all children with rheumatic diseases through patient leadership in the conduct of clinical research. PARTNERS formally links patients, families, researchers, healthcare providers and advocacy groups for juvenile idiopathic arthritis (JIA), childhood-onset systemic lupus erythematosus (cSLE) and juvenile dermatomyositis (JDM). PARTNERS is a patient powered research network including three advocacy groups (Arthritis Foundation [AF], Lupus Foundation of America [LFA], Cure JM Foundation [Cure JM]), a research network (Childhood Arthritis & Rheumatology Research Alliance [CARRA]), and a quality improvement network (Pediatric Rheumatology Care & Outcomes Improvement Network [PR-COIN]). Working together, these groups expand research opportunities for patient families by encouraging membership in PARTNERS and raising member’s research understanding. Our network enables families to become partners in all aspects of clinical research; from proposing research topics to sharing research results.
Currently, through our collaboration with CARRA and PR-COIN, PARTNERS is able to reach out to patients with pediatric rheumatic disease through the clinic, at the point of care. We are also working with our partnering advocacy organizations to increase patient engagement and research awareness through our websites, social media efforts, and other outreach initiatives.