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Rationale and protocol paper for the Asia Pacific Network for inherited eye diseases

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机构： [a]Centre for Innovation & Precision Eye Health, Yong Loo Lin School of Medicine, National University of Singapore, Singapore [b]Department of Ophthalmology, National University Hospital, National University Health System, Singapore [c]Department of Ophthalmology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore [d]Save Sight Institute, The University of Sydney, Sydney, Australia [e]Retinal Unit, Sydney Eye Hospital, Sydney, Australia [f]Centre for Ophthalmology and Visual Science (Lions Eye Institute), The University of Western Australia, Nedlands, Western Australia, Australia [g]Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, East Melbourne, Victoria, Australia [h]Ophthalmology, Department of Surgery, University of Melbourne, East Melbourne, Victoria, Australia [i]Joint Shantou International Eye Center, Shantou University & The Chinese University of Hong Kong, Shantou, China [j]Beijing Institute of Ophthalmology, Beijing Tongren Eye Center, Beijing Tongren Hospital, Capital Medical University, Beijing Ophthalmology & Visual Sciences Key Laboratory, Beijing, China [k]Department of Ophthalmology in Xiang'an Hospital of Xiamen University and Medical Center of Xiamen University, School of Medicine in Xiamen University, Eye Institute of Xiamen University, Fujian Provincial Key Laboratory of Ophthalmology and Visual Science, Fujian Engineering and Research Center of Eye Regenerative Medicine, Xiamen, Fujian, China [l]Department of Ophthalmology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences, Peking Union Medical College, No. 1, Shuai Fu Yuan, Beijing, China [m]Eye Institute and Department of Ophthalmology, Eye & ENT Hospital, Fudan University, Shanghai, China [n]Department of Ophthalmology, Peking University Third Hospital, Beijing, China [o]Beijing Key Laboratory of Restoration of Damaged Ocular Nerve, Peking University Third Hospital, Beijing, China [p]Shri Bhagwan Mahavir Vitreoretinal services, Medical Research Foundation, Sankara Nethralaya, Chennai, India [q]Dr Agarwal Eye Hospital, Chandigarh, India [r]GROW Lab, Narayana Nethralaya Foundation, Bangalore, Karnataka, India [s]Vitreo-Retina Services, Narayana Nethralaya, Bangalore, India [t]Department of Ophthalmology, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada - Sardjito Eye Center, Dr. Sardjito General Hospital, Yogyakarta, Indonesia [u]JEC Eye Hospitals and Clinics, Jakarta, Indonesia [v]Laboratory of Visual Physiology, Division of Vision Research, National Institute of Sensory Organs, NHO Tokyo Medical Center, Tokyo, Japan [w]Department of Ophthalmology and Visual Sciences, Kyoto University Graduate School of Medicine, Sakyo-ku, Kyoto, Japan [x]Department of Ophthalmology, Seoul National University College of Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea [y]Department of Ophthalmology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, South Korea [z]Department of Ophthalmology, Faculty of Medicine, Universiti Kebangsaan Malaysia Medical Center, Kuala Lumpur, Malaysia [aa]UKM Specialist Children's Hospital, Kuala Lumpur, Malaysia [ab]Hospital Canselor Tuanku Muhriz, Jalan Yaacob Latif, Bandar Tun Razak, Kuala Lumpur, Malaysia [ac]UM Eye Research Centre, Department of Ophthalmology, Universiti Malaya, Kuala Lumpur, Malaysia [ad]OasisEye Specialists, Kuala Lumpur, Malaysia [ae]Ophthalmology, Penang Gleneagles, Malaysia [af]Tilganga Institute of Ophthalmology, Kathmandu, Nepal [ag]Makati Medical Center, Makati City, Philippines [ah]DOH Eye Center, East Avenue Medical Center, Quezon City, Philippines [ai]Eye & Retina Surgeons, Camden Medical Centre, Singapore, Singapore [aj]Singapore National Eye Centre, Singapore Eye Research Institute, Singapore [ak]Ophthalmology & Visual Sciences Academic Clinical Program (EYE ACP), Duke-NUS Medical School, Singapore [al]National Healthcare Group Eye Institute, Tan Tock Seng Hospital, Singapore, Singapore [am]Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore [an]Department of Ophthalmology, National Taiwan University Hospital, Taipei, Taiwan [ao]Center of Frontier Medicine, National Taiwan University Hospital, Taipei, Taiwan [ap]Department of Ophthalmology, Edward S. Harkness Eye Institute, Columbia University, New York, NY, USA [aq]Department of Ophthalmology, Chang Gung Memorial Hospital, Linkou Medical Center, Taoyuan, Taiwan [ar]Graduate Institute of Clinical Medical Sciences, College of Medicine, Chang Gung University, Taoyuan, Taiwan [as]Department of Ophthalmology, Cathay General Hospital, Taipei, Taiwan [at]Center of Excellence in Retina, Department of Ophthalmology, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Bangkok, Thailand [au]Department of Ophthalmology and Division of Academic Affairs, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand [av]Department of Ophthalmology, Faculty of Medicine, Ramathibodi Hospital, Mahidol University, Bangkok, Thailand [aw]Narayana Nethralaya, Narayana Health City, Bengaluru, Karnataka, India [ax]Wilmer Eye Institute, Johns Hopkins Hospital, Baltimore, MD 21287, USA [ay]Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium [az]Department of Ophthalmology, Ghent University Hospital, Ghent, Belgium [ba]Moorfields Eye Hospital, London, United Kingdom and UCL Institute of Ophthalmology, University College London, London, United Kingdom [bb]Department of Ophthalmology and Visual Sciences, The Chinese University of Hong Kong, Hong Kong, China

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关键词： Inherited Retinal Diseases Ophthalmic Genetics Deep Phenotyping Disease Registries Asia-Pacific

摘要：

There are major gaps in our knowledge of hereditary ocular conditions in the Asia-Pacific population, which comprises approximately 60% of the world's population. Therefore, a concerted regional effort is urgently needed to close this critical knowledge gap and apply precision medicine technology to improve the quality of lives of these patients in the Asia-Pacific region.Multi-national, multi-center collaborative network.The Research Standing Committee of the Asia-Pacific Academy of Ophthalmology and the Asia-Pacific Society of Eye Genetics fostered this research collaboration, which brings together renowned institutions and experts for inherited eye diseases in the Asia-Pacific region. The immediate priority of the network will be inherited retinal diseases (IRDs), where there is a lack of detailed characterization of these conditions and in the number of established registries.The network comprises 55 members from 35 centers, spanning 12 countries and regions, including Australia, China, India, Indonesia, Japan, South Korea, Malaysia, Nepal, Philippines, Singapore, Taiwan, and Thailand. The steering committee comprises ophthalmologists with experience in consortia for eye diseases in the Asia-Pacific region, leading ophthalmologists and vision scientists in the field of IRDs internationally, and ophthalmic geneticists.The Asia Pacific Inherited Eye Disease (APIED) network aims to (1) improve genotyping capabilities and expertise to increase early and accurate genetic diagnosis of IRDs, (2) harmonise deep phenotyping practices and utilization of ontological terms, and (3) establish high-quality, multi-user, federated disease registries that will facilitate patient care, genetic counseling, and research of IRDs regionally and internationally.Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.

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出版当年[2023]版：

大类 | 3 区医学

小类 | 2 区眼科学

最新[2025]版：

大类 | 2 区医学

小类 | 2 区眼科学

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出版当年[2022]版：

Q1 OPHTHALMOLOGY

最新[2023]版：

Q1 OPHTHALMOLOGY

影响因子： 4.3 最新[2023版] 4.2 最新五年平均 4.3 出版当年[2022版] 4 出版当年五年平均 4.206 出版前一年[2021版] 4.3 出版后一年[2023版]

第一作者：

第一作者机构： [a]Centre for Innovation & Precision Eye Health, Yong Loo Lin School of Medicine, National University of Singapore, Singapore [b]Department of Ophthalmology, National University Hospital, National University Health System, Singapore

共同第一作者：

通讯作者：

通讯机构： [a]Centre for Innovation & Precision Eye Health, Yong Loo Lin School of Medicine, National University of Singapore, Singapore [b]Department of Ophthalmology, National University Hospital, National University Health System, Singapore [c]Department of Ophthalmology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore [*1]Department of Ophthalmology, The National University of Singapore, Singapore.

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Rationale and protocol paper for the Asia Pacific Network for inherited eye diseases

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