Fulltext

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

Wong WM 1 , Tham YC 2 , Simunovic MP 3 , Chen FK 4 , Luu CD 5 , Chen H 6 Show all authors , Jin ZB 7 , Shen RJ 7 , Li S 8 , Sui R 9 , Zhao C 10 , Yang L 11 , Bhende M 12 , Raman R 12 , Sen P 13 , Ghosh A 14 , Poornachandra B 15 , Sasongko MB 16 , Arianti A 17 , Chia V 17 , Mangunsong CO 17 , Manurung F 17 , Fujinami K 18 , Ikeda H 19 , Woo SJ 20 , Kim SJ 21 , Mohd Khialdin S 22 , Othman O 23 , Bastion MC 24 , Kamalden AT 25 , Lott PWP 25 , Fong K 26 , Shunmugam M 26 , Lim A 27 , Thapa R 28 , Pradhan E 28 , Rajkarnikar SP 28 , Adhikari S 28 , Ibañez BMBI 29 , Koh A 30 , Chan CMM 31 , Fenner BJ 31 , Tan TE 31 , Laude A 32 , Ngo WK 33 , Holder GE 1 , Su X 1 , Chen TC 34 , Wang NK 35 , Kang EY 36 , Huang CH 37 , Surawatsatien N 38 , Pisuchpen P 39 , Sujirakul T 40 , Kumaramanickavel G 41 , Singh M 42 , Leroy B 43 , Michaelides M 44 , Cheng CY 45 , Chen LJ 46 , Chan HW 47

Affiliations 

  • 1 Centre for Innovation & Precision Eye Health, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Department of Ophthalmology, National University Hospital, National University Health System, Singapore
  • 2 Centre for Innovation & Precision Eye Health, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Department of Ophthalmology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
  • 3 Save Sight Institute, The University of Sydney, Sydney, Australia; Retinal Unit, Sydney Eye Hospital, Sydney, Australia
  • 4 Centre for Ophthalmology and Visual Science (Lions Eye Institute), The University of Western Australia, Nedlands, Western Australia, Australia; Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, East Melbourne, Victoria, Australia
  • 5 Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, East Melbourne, Victoria, Australia; Ophthalmology, Department of Surgery, University of Melbourne, East Melbourne, Victoria, Australia
  • 6 Joint Shantou International Eye Center, Shantou University & The Chinese University of Hong Kong, Shantou, China
  • 7 Beijing Institute of Ophthalmology, Beijing Tongren Eye Center, Beijing Tongren Hospital, Capital Medical University, Beijing Ophthalmology & Visual Sciences Key Laboratory, Beijing, China
  • 8 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
  • 9 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
  • 10 Eye Institute and Department of Ophthalmology, Eye & ENT Hospital, Fudan University, Shanghai, China
  • 11 Department of Ophthalmology, Peking University Third Hospital, Beijing, China; Beijing Key Laboratory of Restoration of Damaged Ocular Nerve, Peking University Third Hospital, Beijing, China
  • 12 Shri Bhagwan Mahavir Vitreoretinal services, Medical Research Foundation, Sankara Nethralaya, Chennai, India
  • 13 Shri Bhagwan Mahavir Vitreoretinal services, Medical Research Foundation, Sankara Nethralaya, Chennai, India; Dr Agarwal Eye Hospital, Chandigarh, India
  • 14 GROW Lab, Narayana Nethralaya Foundation, Bangalore, Karnataka, India
  • 15 Vitreo-Retina Services, Narayana Nethralaya, Bangalore, India
  • 16 Department of Ophthalmology, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada - Sardjito Eye Center, Dr. Sardjito General Hospital, Yogyakarta, Indonesia
  • 17 JEC Eye Hospitals and Clinics, Jakarta, Indonesia
  • 18 Laboratory of Visual Physiology, Division of Vision Research, National Institute of Sensory Organs, NHO Tokyo Medical Center, Tokyo, Japan
  • 19 Department of Ophthalmology and Visual Sciences, Kyoto University Graduate School of Medicine, Sakyo-ku, Kyoto, Japan
  • 20 Department of Ophthalmology, Seoul National University College of Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea
  • 21 Department of Ophthalmology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, South Korea
  • 22 Department of Ophthalmology, Faculty of Medicine, Universiti Kebangsaan Malaysia Medical Center, Kuala Lumpur, Malaysia; UKM Specialist Children's Hospital, Kuala Lumpur, Malaysia
  • 23 Department of Ophthalmology, Faculty of Medicine, Universiti Kebangsaan Malaysia Medical Center, Kuala Lumpur, Malaysia
  • 24 Department of Ophthalmology, Faculty of Medicine, Universiti Kebangsaan Malaysia Medical Center, Kuala Lumpur, Malaysia; Hospital Canselor Tuanku Muhriz, Jalan Yaacob Latif, Bandar Tun Razak, Kuala Lumpur, Malaysia
  • 25 UM Eye Research Centre, Department of Ophthalmology, Universiti Malaya, Kuala Lumpur, Malaysia
  • 26 OasisEye Specialists, Kuala Lumpur, Malaysia
  • 27 Ophthalmology, Penang Gleneagles, Malaysia
  • 28 Tilganga Institute of Ophthalmology, Kathmandu, Nepal
  • 29 Makati Medical Center, Makati City, Philippines; DOH Eye Center, East Avenue Medical Center, Quezon City, Philippines
  • 30 Eye & Retina Surgeons, Camden Medical Centre, Singapore, Singapore
  • 31 Singapore National Eye Centre, Singapore Eye Research Institute, Singapore; Ophthalmology & Visual Sciences Academic Clinical Program (EYE ACP), Duke-NUS Medical School, Singapore
  • 32 National Healthcare Group Eye Institute, Tan Tock Seng Hospital, Singapore, Singapore; Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore
  • 33 National Healthcare Group Eye Institute, Tan Tock Seng Hospital, Singapore, Singapore
  • 34 Department of Ophthalmology, National Taiwan University Hospital, Taipei, Taiwan; Center of Frontier Medicine, National Taiwan University Hospital, Taipei, Taiwan
  • 35 Department of Ophthalmology, Edward S. Harkness Eye Institute, Columbia University, New York, NY, USA; Department of Ophthalmology, Chang Gung Memorial Hospital, Linkou Medical Center, Taoyuan, Taiwan
  • 36 Department of Ophthalmology, Chang Gung Memorial Hospital, Linkou Medical Center, Taoyuan, Taiwan; Graduate Institute of Clinical Medical Sciences, College of Medicine, Chang Gung University, Taoyuan, Taiwan
  • 37 Department of Ophthalmology, Cathay General Hospital, Taipei, Taiwan
  • 38 Center of Excellence in Retina, Department of Ophthalmology, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Bangkok, Thailand
  • 39 Department of Ophthalmology and Division of Academic Affairs, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand
  • 40 Department of Ophthalmology, Faculty of Medicine, Ramathibodi Hospital, Mahidol University, Bangkok, Thailand
  • 41 Narayana Nethralaya, Narayana Health City, Bengaluru, Karnataka, India
  • 42 Wilmer Eye Institute, Johns Hopkins Hospital, Baltimore, MD 21287, USA
  • 43 Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium; Department of Ophthalmology, Ghent University Hospital, Ghent, Belgium
  • 44 Moorfields Eye Hospital, London, United Kingdom and UCL Institute of Ophthalmology, University College London, London, United Kingdom
  • 45 Centre for Innovation & Precision Eye Health, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Singapore National Eye Centre, Singapore Eye Research Institute, Singapore
  • 46 Department of Ophthalmology and Visual Sciences, The Chinese University of Hong Kong, Hong Kong, China
  • 47 Centre for Innovation & Precision Eye Health, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Department of Ophthalmology, National University Hospital, National University Health System, Singapore; Department of Ophthalmology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore. Electronic address: ophchw@nus.edu.sg
Asia Pac J Ophthalmol (Phila), 2024;13(1):100030.
PMID: 38233300 DOI: 10.1016/j.apjo.2023.100030

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

MeSH terms
Similar publications