Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium
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.