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

Wong, Wendy M; Tham, Yih Chung; Simunovic, Matthew P; Chen, Fred Kuanfu; Luu, Chi D; Chen, Haoyu; Jin, Zi-Bing; ... Chan, Hwei Wuen; + view all (2023) Rationale and protocol paper for the Asia Pacific Network for inherited eye diseases. Asia-Pacific Journal of Ophthalmology , Article 100030. 10.1016/j.apjo.2023.100030. (In press). Green open access

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Abstract

PURPOSE: 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. DESIGN: Multi-national, multi-center collaborative network. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Type: Article
Title: Rationale and protocol paper for the Asia Pacific Network for inherited eye diseases
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.apjo.2023.100030
Publisher version: https://doi.org/10.1016/j.apjo.2023.100030
Language: English
Additional information: © 2023 The Authors. Published by Elsevier Inc. on behalf of Asia-Pacific Academy of Ophthalmology and Academy of Asia-Pacific Professors of Ophthalmology. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
Keywords: Asia-Pacific, Deep Phenotyping, Disease Registries, Inherited Retinal Diseases, Ophthalmic Genetics
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Institute of Ophthalmology
URI: https://discovery.ucl.ac.uk/id/eprint/10186155
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