2023 年复杂淋巴系统异常国际科学大会会议报告

Michael T. Dellinger, T. Ferry, David Williams, Tracy Milne, Louise Murgia, Michael Kelly
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引用次数: 0

摘要

复杂淋巴管畸形(CLA)是一种罕见疾病,因淋巴管发育异常而导致临床表现各异。淋巴管畸形研究所(LMI)、淋巴管瘤病与戈勒姆氏病联盟(LGDA)和欧洲淋巴管畸形联盟(LGD Alliance Europe)主办了一次关于复杂淋巴管畸形的国际会议,以便该领域的领军人物讨论复杂淋巴管畸形研究的最新进展。 会议于 2023 年 9 月 29 日至 30 日在得克萨斯州达拉斯举行。此次会议共有 22 位杰出演讲者和 38 位与会者参加。其他研究人员、临床医生和患者也通过虚拟方式参加了会议。 在本文中,我们将总结会议的主要收获。会议强调了患者的声音在指导研究中的关键作用,与会者聆听了 CLA 患儿患者和家长的故事。会议涵盖的主题包括 CLA 的遗传原因、临床前模型、临床进展、CLA 研究新技术、淋巴成像以及以患者为中心的研究。所有演讲的视频均可在 LGDA 网站上找到。 会议显示,虽然已经取得了进展,但围绕 CLA 的诊断和治疗仍存在许多挑战。为了填补知识空白,改善CLA患者的护理和生活质量,有必要开展持续的研究工作。
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Meeting Report for the 2023 International Scientific Conference on Complex Lymphatic Anomalies
Complex lymphatic anomalies (CLAs) are rare diseases with variable clinical manifestations caused by the abnormal development of lymphatic vessels. The Lymphatic Malformation Institute (LMI), Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), and LGD Alliance Europe sponsored an international conference on CLAs so leaders in the field could discuss recent advances in research on CLAs. The conference occurred in Dallas, Texas, between September 29th and September 30th, 2023. The event had 22 distinguished speakers and 38 attendees. Additional researchers, clinicians, and patients attended the conference virtually. In this article, we summarize the key takeaways from the meeting. The conference emphasized the crucial role of the patient voice in guiding research, and attendees heard stories from patients and parents of children with CLAs. The conference covered topics such as the genetic causes of CLAs, preclinical models, clinical advances, new technologies for CLA research, lymphatic imaging, and patient-centered research. Videos of all the presentations can be found on the LGDA website. The meeting revealed that while progress has been made, many challenges still exist surrounding the diagnosis and treatment of CLAs. Sustained research efforts are necessary to fill the gaps in knowledge and improve the care and quality of life of CLA patients.
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