Bandeira Matilde, Di Cianni Federica, Marinello Diana, Arnaud Laurent, Cannizzo Sara, Carta Claudio, Cornet Alain, Barril Sara M, Bulina Inita, Ferraris Alessandro, Fonseca João, Gaglioti Andrea, Limper Marteen, Lorenzoni Valentina, Majnik Judith, Matucci-Cerinic Marco, Palla Ilaria, Rednic Simona, Schneider Matthias, Smith Vanessa, Sulli Alberto, Søndergaard Klaus, Ticciati Simone, Tincani Angela, Turchetti Giuseppe, Talarico Rosaria, Cutolo Maurizio, Mosca Marta, Taruscio Domenica
Rheumatology Department, Lisbon Academic Medical Centre, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon, Portugal.
Rheumatology Research Unit, Instituto de Medicina Molecular João Lobo Antunes, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal.
Front Med (Lausanne). 2022 Sep 26;9:889997. doi: 10.3389/fmed.2022.889997. eCollection 2022.
Patient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upgrade and link registries for rCTDs, with the final goal to promote a harmonized data collection approach all over Europe for rCTDs.
An online survey addressed to healthcare professionals and patients' representatives active in the field of rCTDs was integrated by an extensive database search in order to build a mapping of existing registries for rCTDs.
A total of 140 registries were found, 38 of which include multiple diseases. No disease-specific registry was identified for relapsing polychondritis, mixed connective tissue disease and undifferentiated connective tissue disease.
This overview on the existing registries for rCTDs provides a useful starting point to identify the gaps and the strengths of registries on the coverage of rCTDs, and to develop a common data set and data collection approach for the establishment of the TogethERN ReCONNET Infrastructure.
患者登记册在支持临床实践、医疗保健规划和医学研究方面发挥着关键作用，能呈现罕见和复杂结缔组织疾病（rCTD）的真实情况。ERN ReCONNET推出了首个欧洲登记基础设施，旨在规划、升级和链接rCTD登记册，最终目标是在全欧洲推广统一的rCTD数据收集方法。
针对rCTD领域的医疗专业人员和患者代表开展了一项在线调查，并结合广泛的数据库搜索，以构建rCTD现有登记册的映射图。
共发现140个登记册，其中38个包含多种疾病。未发现针对复发性多软骨炎、混合性结缔组织病和未分化结缔组织病的特定疾病登记册。
这份关于rCTD现有登记册的概述为识别登记册在rCTD覆盖范围方面的差距和优势，以及为建立TogethERN ReCONNET基础设施开发通用数据集和数据收集方法提供了有用的起点。
