The Rare Immunodeficiency, AutoInflammatory and AutoImmune Disease (RITA) network is a European Research Network (ERN) that brings together the leading centres for rare immune disorders. On April 2018 an online survey was sent to all RITA members in order to facilitate the harmonization of data collection in rare immune disorders registries. Currently, as many as 52 different registries collect data on rare immune disorders, of whom 30 (58%) are dedicated primarily to autoimmune diseases, 15 (29%) to primary immunodeficiencies and 12 (23%) to autoinflammatory disorders. Improving data on patient safety, outcome, and quality of life measures is warranted to unfold the full potential of RITA registries.

中文翻译：

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努力实现欧洲针对罕见免疫疾病患者的医疗保健统一：ERN RITA注册管理机构调查的结果。

罕见免疫缺陷，自身炎性和自身免疫性疾病（RITA）网络是欧洲研究网络（ERN），汇集了罕见免疫疾病的主要研究中心。2018年4月，在线调查已发送给所有RITA成员，以促进统一罕见免疫疾病注册表中的数据收集。目前，多达52个不同的注册表收集了罕见的免疫疾病数据，其中30个（58％）主要致力于自身免疫性疾病，15个（29％）致力于原发性免疫缺陷，12个（23％）致力于自身炎症性疾病。有必要改善有关患者安全性，结果和生活质量衡量指标的数据，以发挥RITA注册管理机构的全部潜力。