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ACR 2020 | Daily Highlights
Self-report in vasculitis
CLINICAL CHARACTERISTICS OF AN INTERNET-BASED COHORT OF PARTICIPANTS WITH A SELF-REPORTED DIAGNOSIS OF CRYOGLOBULINEMIC VASCULITIS OR IGA VASCULITIS
Abstract: 0414
Authors: Jason Springer et al.
Key content:
Cryoglobulinemic vasculitis (CV) and IgA vasculitis are forms of small-vessel vasculitis characterized by immune complex deposition. The purpose of this study was to a) describe the characteristics of an international internet-based cohort of patients with a self-reported diagnosis of CV or IgA vasculitis and b) determine the extent to which these diagnoses agreed with established definitions of disease or classification criteria.
Results: 117 participants reported a diagnosis of Cryoglobulinemic Vasculitis; 79% were female; mean age at diagnosis was 48.7 ± 2.6 years; 22% had a history of hepatitis C and 13% of hematologic malignancy. 96% reported positive serum cryoglobulins. Clinical manifestations included: purpura (94%), peripheral nerve involvement (93%), joint involvement (91%), and kidney involvement (27%). The establishment of the diagnosis was by laboratory testing (84%), symptoms (60%), and biopsy (37%).
103 participants reported a diagnosis of IgA vasculitis; 75% were female); mean age at diagnosis was 42.7 ± 3.2 years, with 77 (75%) developing symptoms in adulthood (?18 years); 52% reported onset after an upper respiratory infection. Clinical manifestations included: purpura (99%), joint involvement (93%), gastrointestinal pain/bleeding (70%), and kidney involvement (66%). Patients reported their diagnosis was established by biopsy results (68%), symptoms (62%), and serum laboratory testing (52%).
Relevance:
This study is a convincing confirmation that patients are experts of their disease: The self-reported clinical manifestations of Cryoglobulinemic Vasculitis and IgA vasculitis were similar to cohorts utilizing the traditional center-based approach. In addition, (not summarized above) most patients with these diseases met established criteria or definitions for their disease. The study strongly suggests to include and rely more on patient-reported data in future clinical trials, particularly studying rare diseases.
Zusammenfassung und Kommentar von:
Prof. Dr. Peter Villiger
Bern
