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

Wendy M. Wong, Yih Chung Tham, Matthew P. Simunovic, Fred Kuanfu Chen, Chi D. Luu, Haoyu Chen, Zi Bing Jin, Ren Juan Shen, Shiying Li, Ruifang Sui, Chen Zhao, Liping Yang, Muna Bhende, Rajiv Raman, Parveen Sen, Arkasubhra Ghosh, B. Poornachandra, Muhammad Bayu Sasongko, Alia Arianti, Valen ChiaCosmos O. Mangunsong, Florence Manurung, Kaoru Fujinami, Hanako Ikeda, Se Joon Woo, Sang Jin Kim, Safinaz Mohd Khialdin, Othmaliza Othman, Mae Lynn Catherine Bastion, Ain Tengku Kamalden, Pooi Wah Penny Lott, Kenneth Fong, Manoharan Shunmugam, Amelia Lim, Raba Thapa, Eli Pradhan, Sthapit Purnima Rajkarnikar, Srijana Adhikari, B. Manuel Benjamin IV Ibañez, Adrian Koh, Choi Mun M. Chan, Beau J. Fenner, Tien En Tan, Augustinus Laude, Wei Kiong Ngo, Graham E. Holder, Xinyi Su, Ta Ching Chen, Nan Kai Wang, Eugene Yu Chuan Kang, Chu Hsuan Huang, Nuntachai Surawatsatien, Phattrawan Pisuchpen, Tharikarn Sujirakul, Govindasamy Kumaramanickavel, Mandeep Singh, Bart Leroy, Michel Michaelides, Ching Yu Cheng, Li Jia Chen, Hwei Wuen Chan

Research output: Contribution to journalShort surveypeer-review

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.

Original languageEnglish
Article number100030
JournalAsia-Pacific Journal of Ophthalmology
Volume13
Issue number1
DOIs
Publication statusPublished - 1 Jan 2024

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