The Pediatric Rheumatology Research Annual Scientific Meeting will be the forum for the pediatric rheumatology community for sharing the scientific state-of-the-art methodologies, scientific opportunities and new technologies. This proposal is a renewal of our previous conference grant to support meetings in 2012, 2013, 2014, 2015 and 2016. These meeting will be co-sponsored by the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a research network comprising the majority of pediatric rheumatologists in the US and Canada. These meetings are conceived to be 2 1/2 days and all members of CARRA, the pediatric rheumatology community, individuals interested in pediatric rheumatic disease research will be invited to attend as well as invited speakers and experts in related fields (internal medicine rheumatology, immunology, epidemiology, and other pediatric research networks). In 2012, 2014 and 2016 meeting a one day workshop called 'Essentials of Clinical Research'will be held preceding the 2 &1/2 day scientific annual meeting.. The one day workshop will offer a mix of didactic and interactive sessions on the tension between being a treating physician and PI, role of the IRB, consent forms and consenting process, adverse event reporting, optimizing study start up, recruitment and retention, monitoring of studies, site responsibilities, investigational drug handling, protocol review, and site budgeting and contracts. The 2013 and 2015 meetings will be 2 &1/2 day scientific meetings with more time for protocol development in each major disease area. All meetings will have a mix of didactic sessions on translational topics relevant to pediatric rheumatologic diseases and clinical research methodology, and time for development of protocols. Facilitated interactive sessions will identify the key research needs and opportunities in each of the major disease area, with development of the scientific priorities for future development into specific research projects. Collaborative opportunities and mentoring relationships will be identified and fostered, and translational research opportunities will be identified in coordination with clinical research questions. The objectives of this meeting are to: 1. To advance our understanding of the pathogenesis (immune, genetic, epigenetic and inflammatory), epidemiology, and current and innovative therapeutic approaches in pediatric rheumatic diseases;2. Provide a forum for development of collaborations and mentoring for the pediatric rheumatology research community with special attention to young investigators;3. Provide training and education in major areas relevant to clinical pediatric rheumatology research and the conduct of clinical research. 4. To integrate pediatric rheumatology research coordinators into the advancement of the CARRA research strategy and the development of specific research projects This meeting will be one of the major avenues whereby CARRA will achieve its primary mission of facilitating the development of high-quality research studies and ultimately creating a research portfolio that includes relevant research projects in every type of pediatric rheumatic disease.
The Pediatric Rheumatology Research Annual Scientific Meeting is key to fostering and facilitating research in pediatric rheumatic diseases because of the absolute need for collaboration and scientific cross-fertilization in pediatric rheumatology. The family of pediatric rheumatic diseases (including juvenile idiopathic arthritis, systemic lupus erythematosus, juvenile dermatomyositis, scleroderma, and vasculitis) are among the most common chronic diseases of children comparable in occurrence to juvenile Type 1 Diabetes. This meeting is the major venue in pediatric rheumatology in the US and Canada for identifying the important research questions and developing high-quality, well-conceived studies to answer these questions and ultimately improve the health outcomes of children affected by pediatric rheumatic diseases.
|Fiorentino, David F; Kuo, Karen; Chung, Lorinda et al. (2015) Distinctive cutaneous and systemic features associated with antitranscriptional intermediary factor-1? antibodies in adults with dermatomyositis. J Am Acad Dermatol 72:449-55|
|Chung, Lorinda; Ball, Katharine; Yaqub, Aaliya et al. (2014) Effect of the endothelin type A-selective endothelin receptor antagonist ambrisentan on digital ulcers in patients with systemic sclerosis: results of a prospective pilot study. J Am Acad Dermatol 71:400-1|
|Li, Suzanne C; Torok, Kathryn S; Pope, Elena et al. (2012) Development of consensus treatment plans for juvenile localized scleroderma: a roadmap toward comparative effectiveness studies in juvenile localized scleroderma. Arthritis Care Res (Hoboken) 64:1175-85|
|Stinson, Jennifer N; Connelly, Mark; Jibb, Lindsay A et al. (2012) Developing a standardized approach to the assessment of pain in children and youth presenting to pediatric rheumatology providers: a Delphi survey and consensus conference process followed by feasibility testing. Pediatr Rheumatol Online J 10:7|
|Mina, Rina; von Scheven, Emily; Ardoin, Stacy P et al. (2012) Consensus treatment plans for induction therapy of newly diagnosed proliferative lupus nephritis in juvenile systemic lupus erythematosus. Arthritis Care Res (Hoboken) 64:375-83|
|Huber, Adam M; Robinson, Angela B; Reed, Ann M et al. (2012) Consensus treatments for moderate juvenile dermatomyositis: beyond the first two months. Results of the second Childhood Arthritis and Rheumatology Research Alliance consensus conference. Arthritis Care Res (Hoboken) 64:546-53|