Committees and Work Groups
The Early Investigator group is excited to announce that Sri Grevich, from Seattle Children’s Hospital, and Michael Ombrello, from the NIH, have been selected to receive travel grants to present their work at the Pediatric Rheumatology European Society Young Investigator Meeting in Genoa, Italy in September. Read more.
JDM is a rare but serious chronic childhood multi-system autoimmune disease, which at times resembles chronic graft-versus-host disease. JDM can result in serious morbidity and even mortality if not treated properly. Read more.
JIA is a type of arthritis with no definite cause and an onset prior to 16 years of age. JIA causes joint destruction, pain, and permanent disability. There are multiple types of JIA; collectively, they represent one of the most common chronic diseases in children and the most prevalent pediatric rheumatic illness. Read more.
Pain in children with rheumatic diseases is common, yet work remains for pediatric rheumatologist and other allied health professionals to be able to assess and treat pain. A consistent and comprehensive approach is needed to effectively assess, treat, and monitor pain outcomes in the pediatric rheumatology population. Read more.
Systemic Lupus Erythematosus (SLE)is a disease that affects many internal organs in the body. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with periods of illness and remission. Lupus affects women more frequently than men, and often begins or worsens at puberty. Read more.
Scleroderma, Vasculitis, Autoinflammatory, and Rare Diseases (SVARD) Committee is working to improve outcomes for children with scleroderma, vasculitis, auto-inflammatory or other rare diseases. The diseases studied by the SVARD committee are too rare to be independent. Many are associated with major morbidity, some with mortality. All impact normal childhood quality of life and function. So, there is a need to improve the identification, management, and outcome of these diseases .Read more.
The Transition Work Group, led by Erica Lawson, Aimee Hersh, and Peter Chira, is focused on conducting a qualitative transition needs assessment, the Transition Virtual Focus Group, and evaluating a recently-developed transition intervention, the iPeer2Peer virtual mentoring program. The Transition Virtual Focus Group project will aim to assess the transition needs and priorities of teens, parents, and post-transition young adults with JIA and SLE via innovative online focus groups. Read more.
The CARRA Biorepository RFP will be going out to all TRTC members, CARRA Registry PIs, and commercial biobank vendors. The goal is to establish a centralized biorepository that will ship kits, store biosamples, handle biosample shipping requests and overall management of the CARRA biosample inventory associated with the registry. Read more.