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[俄罗斯慢性甲状旁腺功能减退症登记系统与临床决策支持系统整合]

[The Russian registry of chronic hypoparathyroidism and clinical decision support system integration].

作者信息

Kovaleva E V, Eremkina A K, Ajnetdinova A R, Miliutina A P, Mokrysheva N G

机构信息

Endocrinology Research Center.

出版信息

Probl Endokrinol (Mosk). 2021 Aug 6;67(4):8-12. doi: 10.14341/probl12796.

Abstract

According to available research, chronic hypoparathyroidism is a relatively rare disease characterized by low serum calcium levels and the absence or deficiency of parathyroid hormone. The chronic course of the disease is associated with the multicomponent medical therapy, careful dynamic monitoring to reduce the risks of various complications in different organs and systems as well as disability and mortality.The Russian registry of patients with chronic postsurgical and nonsurgical hypoparathyroidism has started its work in 2020, based on data of the Endocrinology Research Centre. The main goals of the Registry are the assessment of the actual prevalence, incidence of hypoparathyroidism, the key epidemiological characteristics, the analysis of the clinical features and medical therapy of chronic hypoparathyroidism in Russian Federation.This article covers all objectives of this project, the methodology for maintaining the registry of chronic postsurgical and nonsurgical hypoparathyroidism, the analytical possibilities of its use, including the integration of a decision support system designed to help specialists in real clinical practice follow the algorithms for diagnosis and treatment of the disease, approved by clinical guidelines.The registry of chronic postsurgical and nonsurgical hypoparathyroidism is located on a single platform for the registers of endocrinopathies, regulated by the Endocrinology Research Centre (http://gipopt.clin-reg.ru/).

摘要

根据现有研究,慢性甲状旁腺功能减退症是一种相对罕见的疾病,其特征为血清钙水平低以及甲状旁腺激素缺乏或不足。该疾病的慢性病程与多组分药物治疗、仔细的动态监测相关,以降低不同器官和系统出现各种并发症以及残疾和死亡的风险。俄罗斯慢性术后和非手术性甲状旁腺功能减退症患者登记处基于内分泌研究中心的数据于2020年开始运作。该登记处的主要目标是评估甲状旁腺功能减退症的实际患病率、发病率、关键流行病学特征,分析俄罗斯联邦慢性甲状旁腺功能减退症的临床特征和药物治疗情况。本文涵盖了该项目的所有目标、慢性术后和非手术性甲状旁腺功能减退症登记处的维护方法、其使用的分析可能性,包括集成一个决策支持系统,该系统旨在帮助专科医生在实际临床实践中遵循经临床指南批准的疾病诊断和治疗算法。慢性术后和非手术性甲状旁腺功能减退症登记处位于内分泌研究中心监管的内分泌疾病登记处的单一平台上(http://gipopt.clin-reg.ru/)。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/41c3/9753796/727de65ea480/problendo-67-12796-g001.jpg

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