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Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders

机译：欧洲参考网络Ithaca的远程医疗策略，用于少数发育障碍患者的诊断和管理

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Michael Smith; Elizabeth Alexander; Ruta Marcinkute; Dorica Dan; Myfanwy Rawson; Siddharth Banka; Jason Gavin; Hany Mina; Con Hennessy; Florence Riccardi; Francesca Clementina Radio; Marketa Havlovicova; Matteo Cassina; Adela Chirita Emandi; Melanie Fradin; Lianne Gompertz; Ann Nordgren; Rasa Traberg; Massimiliano Rossi; Aurelién Trimouille; Rasika Sowmyalakshmi; Bruno Dallapiccola; Alessandra Renieri; Laurence Faivre; Bronwyn Kerr; Alain Verloes; Jill Clayton-Smith; Sofia Douzgou;
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1. The pooling of manpower and resources through the establishment of European reference networks and rare disease patient registries is a necessary area of collaboration for rare renal disorders [J] . Samantha Parker Nephrology, dialysis, transplantation: official publication of the European Dialysis and Transplant Association - European Renal Association . 2014,第Suppla4期

机译：通过建立欧洲参考网络和罕见病患者注册中心来集中人力和资源是罕见肾病合作的必要领域
2. European Society for Immunodeficiencies (ESID) and European Reference Network on Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune Diseases (ERN RITA) Complement Guideline: Deficiencies, Diagnosis, and Management [J] . Journal of Clinical Immunology . 2020,第4期

机译：欧洲免疫缺失（ESID）和欧洲参考网络对罕见的原发性免疫缺陷，自身炎症和自身免疫疾病（ERN RITA）补充指南：缺陷，诊断和管理
3. The Lithuanian prospective study of patients with hidradenitis suppurativa based on clinical outcomes proposed by the European Reference Network for Rare and Complex Skin Disorders (ERN-Skin) [J] . Kucinskiene V., Jievaltaite V., Valiukeviciene S. Experimental dermatology . 2019,第S2期

机译：基于欧洲参考网络提出的临床结果的肝硬化患者立陶宛患者前瞻性研究稀有和复杂皮肤病（ERN-SKIN）
4. Implementation of EXABO - An Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases [C] . Désirée Walther, Olivia Steinmann, Thomas O.F. Wagner, Medical Informatics Europe Conference . 2020

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5. Quasi-experimental study to determine the impact of parallel trade and external reference pricing strategies utilized by the European Union (EU) on the rate of drug approval launches and patient access to U.S. designated fast track drugs and orphan drugs. [D] . King, Josephine G. 2008

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6. Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders [O] . Michael Smith, Elizabeth Alexander, Ruta Marcinkute, 2020

机译：欧洲参考网络ITHACA的远程医疗策略用于诊断和管理罕见的发育障碍患者
7. Diagnosis and management of Bartter syndrome: executive summary of the consensus and recommendations from the European Rare Kidney Disease Reference Network Working Group for Tubular Disorders [O] . Martin Konrad, Tom Nijenhuis, Gema Ariceta, 2021

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8. Unstable Angina: Diagnosis and Management. Clinical Practice Guideline Number 10; Diagnosing and Managing Unstable Angina. Quick Reference Guide for Clinicians Number 10; Managing Unstable Angina. Patient and Family Guide [R] . 1994

机译：不稳定型心绞痛：诊断与治疗。临床实践指南第10号;诊断和治疗不稳定型心绞痛。临床医师快速参考指南第10号;管理不稳定型心绞痛。患者和家庭指南

Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders

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