Научно-практическая ревматология (Dec 2016)
THE VALUE OF THE RUSSIAN NATIONAL REGISTRY OF PATIENTS WITH ANCA-ASSOCIATED SYSTEMIC VASCULITIS AS AN INNOVATIVE TOOL OF PERSONALIZED INDUCTION AND MAINTENANCE THERAPY
Abstract
Antineutrophil cytoplasmic antibody-associated systemic vasculitides (ANCA-SV) are characterized by multiple organ failure, clinical and immunological heterogeneity, and a variety of manifestations and require a high-quality interaction between the patient and the physician at all stages. Rational and personalized maintenance of a delicate balance between the use of an evidence-based treatment protocol, which is sufficient to secure sustainable suppression of the activity of ANCA-SV, and the simultaneous containment of the risk of treatment adverse events are the mainstay for successful therapy.In response to the increased need for improved approaches to managing patients with ANCA-SV, the V.A. Nasonova Research Institute of Rheumatology has elaborated a National Registry of patients with ANCA-SV, which is a regularly updated electronic database for patient follow-up and should be regarded as an innovative personalized induction and maintenance therapy tool that corresponds with the current treat-to-target concept. The main objective of the registry is to permanently reproduce the goals of therapy for ANCA-SV, as well as to maintain a sustainable remission, to reduce the incidence of treatment adverse events, to monitor comorbidity, and to achieve a high quality of life. Further development of the Russian National Registry of patients with ANCA-SV as a federal program may play a key role in enhancing the effectiveness of health care for patients with rare and severe diseases, contribute to the development of information and telecommunication medical technologies for the provision of ANCA-SV patients with emergency counseling and medical assistance at the expert centers and for that of continuity at different treatment stages, to a reduction in pharmacoeconomic expenses.
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