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全球协作的挑战:食管闭锁国际网络所面临的挑战。

Navigating global collaboration: challenges faced by the international network on esophageal atresia.

机构信息

Reference Center for Congenital Oesophageal Anomalies, Univ. Lille, CHU Lille, Infinite U1286, Lille, F-59000, France.

Discipline of Pediatrics, School of Women's and Children's Health, Faculty of Medicine, University of New South Wales, Randwick, NSW, Australia.

出版信息

Orphanet J Rare Dis. 2024 Aug 21;19(1):304. doi: 10.1186/s13023-024-03250-6.

DOI:10.1186/s13023-024-03250-6
PMID:39169371
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11337619/
Abstract

The International Network on Esophageal Atresia (INoEA) stands as a beacon of collaboration in addressing the complexities of this congenital condition on a global scale. The eleven board members, from various countries (USA, Canada, France, Australia, Italy, Sweden, Germany, and The Netherlands) and backgrounds (pediatric gastroenterology, pediatric surgery, pediatric pulmonology, nursing, and parents) met in a face-to-face symposium in Lille in November 2023, to identify challenges and solutions for improving global collaboration of the network.

摘要

国际食管闭锁网络(INoEA)是一个协作的典范,致力于在全球范围内解决这种先天性疾病的复杂性。这十一位董事会成员来自不同的国家(美国、加拿大、法国、澳大利亚、意大利、瑞典、德国和荷兰)和背景(儿科胃肠病学、小儿外科学、小儿肺病学、护理和家长),于 2023 年 11 月在里尔举行了面对面的研讨会,以确定改善网络全球协作的挑战和解决方案。

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本文引用的文献

1
Establishment of a condition-specific quality-of-life questionnaire for children born with esophageal atresia aged 2-7 across 14 countries.为14个国家2至7岁的食管闭锁患儿建立特定病情生活质量问卷。
Front Pediatr. 2023 Oct 23;11:1253892. doi: 10.3389/fped.2023.1253892. eCollection 2023.
2
The International Network on Oesophageal Atresia (INoEA) consensus guidelines on the transition of patients with oesophageal atresia-tracheoesophageal fistula.国际食管闭锁-食管气管瘘网络(INoEA)关于食管闭锁-食管气管瘘患者过渡期的共识指南。
Nat Rev Gastroenterol Hepatol. 2023 Nov;20(11):735-755. doi: 10.1038/s41575-023-00789-w. Epub 2023 Jun 7.
3
Management of Gastroesophageal Reflux Disease in Esophageal Atresia Patients: A Cross-Sectional Survey amongst International Clinicians.食管闭锁患者胃食管反流病的管理:国际临床医生的横断面调查。
J Pediatr Gastroenterol Nutr. 2022 Aug 1;75(2):145-150. doi: 10.1097/MPG.0000000000003483. Epub 2022 Jun 7.
4
Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study.74 个低收入、中等收入和高收入国家 264 家医院的胃肠道先天性畸形死亡率:一项多中心、国际、前瞻性队列研究。
Lancet. 2021 Jul 24;398(10297):325-339. doi: 10.1016/S0140-6736(21)00767-4. Epub 2021 Jul 13.
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Care recommendations for the respiratory complications of esophageal atresia-tracheoesophageal fistula.食管闭锁-气管食管瘘的呼吸系统并发症护理建议。
Pediatr Pulmonol. 2020 Oct;55(10):2713-2729. doi: 10.1002/ppul.24982. Epub 2020 Aug 7.
6
The Esophageal-Atresia-Quality-of-life Questionnaires: Feasibility, Validity and Reliability in Sweden and Germany.《食管闭锁-生活质量问卷》:在瑞典和德国的可行性、有效性和可靠性。
J Pediatr Gastroenterol Nutr. 2018 Oct;67(4):469-477. doi: 10.1097/MPG.0000000000002019.
7
Position Paper of INoEA Working Group on Long-Gap Esophageal Atresia: For Better Care.国际食管闭锁与食管气管瘘研究协会(INoEA)长段食管闭锁工作组立场文件:为了更好的治疗。
Front Pediatr. 2017 Mar 31;5:63. doi: 10.3389/fped.2017.00063. eCollection 2017.
8
ESPGHAN-NASPGHAN Guidelines for the Evaluation and Treatment of Gastrointestinal and Nutritional Complications in Children With Esophageal Atresia-Tracheoesophageal Fistula.欧洲儿科胃肠病、肝病和营养学会-北美儿科胃肠病、肝病和营养学会食管闭锁-气管食管瘘患儿胃肠道及营养并发症评估与治疗指南
J Pediatr Gastroenterol Nutr. 2016 Nov;63(5):550-570. doi: 10.1097/MPG.0000000000001401.