@article {Wilkinson224, author = {Nicholas M R Wilkinson and Jacqueline Page and Am{\'e}rica G Uribe and Victor Espinosa and David A Cabral}, title = {Establishment of a pilot pediatric registry for chronic vasculitis is both essential and feasible: a Childhood Arthritis and Rheumatology Alliance (CARRA) survey.}, volume = {34}, number = {1}, pages = {224--226}, year = {2007}, publisher = {The Journal of Rheumatology}, abstract = {OBJECTIVE: To identify the need for, and feasibility of, establishing a web-based USA/Canadian registry of children with chronic systemic vasculitis--an otherwise insufficiently studied population. METHODS: Physician members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA; n = 126) were invited to complete 2 surveys exploring vasculitis-related experience, beliefs about childhood versus adult vasculitis, and commitment to contribute patients to a prospective registry. Diagnoses included Wegener{\textquoteright}s granulomatosis (WG), childhood polyarteritis nodosa, microscopic polyangiitis (MPA), Takayasu{\textquoteright}s arteritis, primary angiitis of the central nervous system (PACNS), vasculitis, and unclassified vasculitis. RESULTS: One or both surveys were completed by 102 (81\%) physicians. Almost half of first-survey respondents had been in practice for \> 15 years. Collective estimated lifetime experience was \>1500 patients (WG and unclassified vasculitis were the most common diagnoses). Three hundred seventeen children with vasculitis were seen in the year preceding the survey, with most physicians seeing only 2-5 patients. The majority of respondents believed that childhood vasculitis differed from adult disease, particularly with respect to classification criteria and disease activity markers. Fifty-nine members committed to contribute 2 years{\textquoteright} data (approximately 120 patients) to a pilot registry limited to time of diagnosis, focusing on WG, MPA, Churg-Strauss syndrome, PACNS, and unclassified vasculitis. CONCLUSION: We obtained overwhelming consensus from an experienced body of pediatric rheumatologists on the need to study childhood-onset vasculitis independently from adult disease, together with commitment from sufficient members to prospectively contribute 2 years{\textquoteright} data to a limited pilot registry to answer some basic questions about presenting and diagnostic features and initial treatment practices at disease onset.}, issn = {0315-162X}, URL = {https://www.jrheum.org/content/34/1/224}, eprint = {https://www.jrheum.org/content/34/1/224.full.pdf}, journal = {The Journal of Rheumatology} }