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's granulomatosis (WG), childhood polyarteritis nodosa, microscopic polyangiitis (MPA), Takayasu'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' 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' data to a limited pilot registry to answer some basic questions about presenting and diagnostic features and initial treatment practices at disease onset.
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's granulomatosis (WG), childhood polyarteritis nodosa, microscopic polyangiitis (MPA), Takayasu'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' 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' data to a limited pilot registry to answer some basic questions about presenting and diagnostic features and initial treatment practices at disease onset.
Authors: Michael L Miller; Jason Ruprecht; Deli Wang; Ying Zhou; George Lales; Sean McKenna; Marisa Klein-Gitelman Journal: Pediatr Rheumatol Online J Date: 2011-04-14 Impact factor: 3.054
Authors: Clara Westwell-Roper; Joanna M Lubieniecka; Kelly L Brown; Kimberly A Morishita; Cherry Mammen; Linda Wagner-Weiner; Eric Yen; Suzanne C Li; Kathleen M O'Neil; Sivia K Lapidus; Paul Brogan; Rolando Cimaz; David A Cabral Journal: Pediatr Rheumatol Online J Date: 2017-08-07 Impact factor: 3.054
Authors: Angela S Quan; Jürgen Brunner; Benjamin Rose; Martin Smitka; Gabriele Hahn; Clare E Pain; Renate Häfner; Fabian Speth; Lucia Gerstl; Christian M Hedrich Journal: Front Pediatr Date: 2021-03-26 Impact factor: 3.418
Authors: E R Mutsaers; R Witteveen; W van den Bosch-Ruis; T W Kuijpers; M A van Houten; J M van den Berg Journal: Clin Rheumatol Date: 2009-09-09 Impact factor: 2.980
Authors: Clara Preto; Armandina Silva; Sandra Alves; Margarida Guedes; Paula Matos; Conceição Mota; Paula Rocha; Paula C Fernandes Journal: Case Rep Pediatr Date: 2017-12-19