Rubbo Bruna, Behan Laura, Dehlink Eleonora, Goutaki Myrofora, Hogg Claire, Kouis Panayiotis, Kuehni Claudia E, Latzin Philipp, Nielsen Kim, Norris Dominic, Nyilas Sylvia, Price Mareike, Lucas Jane S
Primary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK.
University of Southampton Faculty of Medicine, Academic Unit of Clinical and Experimental Medicine, Southampton, UK.
BMC Proc. 2016 Nov 29;10(Suppl 9):66. doi: 10.1186/s12919-016-0067-0. eCollection 2016.
Primary ciliary dyskinesia (PCD) is a rare heterogenous condition that causes progressive suppurative lung disease, chronic rhinosinusitis, chronic otitis media, infertility and abnormal situs. 'Better Experimental Approaches to Treat Primary Ciliary Dyskinesia' (BEAT-PCD) is a network of scientists and clinicians coordinating research from basic science through to clinical care with the intention of developing treatments and diagnostics that lead to improved long-term outcomes for patients. BEAT-PCD activities are supported by EU Framework Programme Horizon 2020 funded COST Action (BM1407). The Inaugural Conference of BEAT-PCD was held in December 2015 in Southampton, UK. The conference attracted ninety-six scientists, clinicians, allied health professionals, industrial partners and patient representatives from twenty countries. We aimed to identify the needs for PCD research and clinical care, particularly focussing on basic science, epidemiology, diagnostic testing, clinical management and clinical trials. The multidisciplinary conference provided an interactive platform for exchanging ideas through a program of lectures, poster presentations, breakout sessions and workshops. This allowed us to develop plans for collaborative studies. In this report, we summarize the meeting, highlight developments, and discuss open questions thereby documenting ongoing developments in the field of PCD research.
原发性纤毛运动障碍(PCD)是一种罕见的异质性疾病,可导致进行性化脓性肺部疾病、慢性鼻窦炎、慢性中耳炎、不孕症和内脏反位。“治疗原发性纤毛运动障碍的更好实验方法”(BEAT-PCD)是一个由科学家和临床医生组成的网络,他们协调从基础科学到临床护理的研究,旨在开发能够改善患者长期预后的治疗方法和诊断方法。BEAT-PCD活动得到了欧盟地平线2020框架计划资助的欧洲科学与技术合作组织(COST)行动(BM1407)的支持。BEAT-PCD首届会议于2015年12月在英国南安普敦举行。会议吸引了来自20个国家的96名科学家、临床医生、专职医疗人员、行业合作伙伴和患者代表。我们旨在确定PCD研究和临床护理的需求,尤其侧重于基础科学、流行病学、诊断测试、临床管理和临床试验。这次多学科会议通过讲座、海报展示、分组讨论和研讨会等形式提供了一个互动平台,以便交流想法。这使我们能够制定合作研究计划。在本报告中,我们总结了会议内容,突出了进展情况,并讨论了悬而未决的问题,从而记录了PCD研究领域的持续发展。