Extract
Rare diseases have such a low prevalence that special organisation of the patient care pathway is required to address them. In France, the implementation of specific cystic fibrosis (CF) centres [1] has improved the care pathway of CF patients. Indeed, early diagnosis and progress in usual routine treatment might have contributed to improving the prognosis of CF [2]. In the light of this success, rare respiratory diseases reference centres (CRMR: “centre de Références des Maladies Respiratoires Rares”) were created from 2007 under the framework of the national plan for rare diseases. The ear, nose and throat (ENT), pneumology and paediatrics departments at our hospital (CHIC: “Centre hospitalier intercommunal de Créteil”) have a long-standing expertise in the diagnosis and treatment of primary ciliary dyskinesia (PCD) [3, 4]. A reference centre for rare respiratory diseases (CRMR-RESPIRARE-Site Créteil) was accredited in 2017.
抽象的
这项研究表明,稀有肺部疾病中心的创建影响了PCD患者护理途径,物理治疗师和小儿肺病学咨询以及急诊室就诊的减少。https://bit.ly/3BfsVWr
致谢
We are very grateful to the patients who accepted to participate to this study and RespiRare and RADICO-PCD for their valuable help in collecting the data used in this study. We thank the Filière RespiFil together with BEAT-PCD for their support and assistance and Samuel Kerr for English editing assistance. This study was supported by the REMEDIA project funded by the European Union's Horizon 2020 Research and Innovation Program under grant agreement number 874753.
脚注
利益冲突:作者声明他们对本文没有利益冲突。
- 已收到2021年9月4日。
- AcceptedOctober 14, 2021.
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