Practice Patterns and Challenges in Managing Inherited Retinal Diseases Across Asia-Pacific: A Survey from the APIED Network
Issued Date
2024-01-01
Resource Type
eISSN
21620989
Scopus ID
2-s2.0-85206664716
Journal Title
Asia-Pacific Journal of Ophthalmology
Rights Holder(s)
SCOPUS
Bibliographic Citation
Asia-Pacific Journal of Ophthalmology (2024)
Suggested Citation
Wong W.M., Tham Y.C., Ayton L.N., Britten-Jones A.C., Edwards T.L., Grigg J., Simunovic M.P., Chen F.K., Jin Z.B., Shen R.J., Sui R., Yang L., Zhao C., Chen H., Li S., Ding X., Bhende M., Raman R., Sen P., Poornachandra B., Chia V., Manurung F., Sasongko M.B., Ikeda H., Fujinami K., Woo S.J., Kim S.J., Bastion M.L.C., Kamalden A.T., Lott P.P., Fong K., Shunmugam M., Lim A., Thapa R., Ibañez B.M.B., Koh A., Holder G.E., Su X., Chan C.M., Fenner B.J., Laude A., Ngo W.K., Chen T.C., Wang N.K., Kang E.Y.C., Surawatsatien N., Pisuchpen P., Sujirakul T., Wongchaisuwat N., Apivatthakakul A., Kumaramanickavel G., Leroy B., Michaelides M., Pontikos N., Cheng C.Y., Pang C.P., Chen L.J., Chan H.W. Practice Patterns and Challenges in Managing Inherited Retinal Diseases Across Asia-Pacific: A Survey from the APIED Network. Asia-Pacific Journal of Ophthalmology (2024). doi:10.1016/j.apjo.2024.100098 Retrieved from: https://repository.li.mahidol.ac.th/handle/20.500.14594/101746
Title
Practice Patterns and Challenges in Managing Inherited Retinal Diseases Across Asia-Pacific: A Survey from the APIED Network
Author(s)
Wong W.M.
Tham Y.C.
Ayton L.N.
Britten-Jones A.C.
Edwards T.L.
Grigg J.
Simunovic M.P.
Chen F.K.
Jin Z.B.
Shen R.J.
Sui R.
Yang L.
Zhao C.
Chen H.
Li S.
Ding X.
Bhende M.
Raman R.
Sen P.
Poornachandra B.
Chia V.
Manurung F.
Sasongko M.B.
Ikeda H.
Fujinami K.
Woo S.J.
Kim S.J.
Bastion M.L.C.
Kamalden A.T.
Lott P.P.
Fong K.
Shunmugam M.
Lim A.
Thapa R.
Ibañez B.M.B.
Koh A.
Holder G.E.
Su X.
Chan C.M.
Fenner B.J.
Laude A.
Ngo W.K.
Chen T.C.
Wang N.K.
Kang E.Y.C.
Surawatsatien N.
Pisuchpen P.
Sujirakul T.
Wongchaisuwat N.
Apivatthakakul A.
Kumaramanickavel G.
Leroy B.
Michaelides M.
Pontikos N.
Cheng C.Y.
Pang C.P.
Chen L.J.
Chan H.W.
Tham Y.C.
Ayton L.N.
Britten-Jones A.C.
Edwards T.L.
Grigg J.
Simunovic M.P.
Chen F.K.
Jin Z.B.
Shen R.J.
Sui R.
Yang L.
Zhao C.
Chen H.
Li S.
Ding X.
Bhende M.
Raman R.
Sen P.
Poornachandra B.
Chia V.
Manurung F.
Sasongko M.B.
Ikeda H.
Fujinami K.
Woo S.J.
Kim S.J.
Bastion M.L.C.
Kamalden A.T.
Lott P.P.
Fong K.
Shunmugam M.
Lim A.
Thapa R.
Ibañez B.M.B.
Koh A.
Holder G.E.
Su X.
Chan C.M.
Fenner B.J.
Laude A.
Ngo W.K.
Chen T.C.
Wang N.K.
Kang E.Y.C.
Surawatsatien N.
Pisuchpen P.
Sujirakul T.
Wongchaisuwat N.
Apivatthakakul A.
Kumaramanickavel G.
Leroy B.
Michaelides M.
Pontikos N.
Cheng C.Y.
Pang C.P.
Chen L.J.
Chan H.W.
Author's Affiliation
Narayana Nethralaya
Ramathibodi Hospital
Siriraj Hospital
Tilganga Institute of Ophthalmology
STU-CUHK Joint Shantou International Eye Center
The First Affiliated Hospital of Xiamen University
Peking University Third Hospital
Graduate School of Medicine
Lee Kong Chian School of Medicine
Seoul National University Bundang Hospital
Duke-NUS Medical School
University of Western Australia, Centre for Ophthalmology and Visual Science
Beijing Tongren Hospital, Capital Medical University
National Taiwan University Hospital
Makati Medical Center
Universitas Gadjah Mada
Universitair Ziekenhuis Gent
National Hospital Organization Tokyo Medical Center
Faculty of Medicine, Chiang Mai University
Chang Gung Memorial Hospital
National University Hospital
Hospital Canselor Tuanku Muhriz UKM
Universiti Malaya
NUS Yong Loo Lin School of Medicine
University of Melbourne
Medical Research Foundation, Chennai
Singapore Eye Research Institute
Sun Yat-Sen University
Samsung Medical Center, Sungkyunkwan university
Moorfields Eye Hospital NHS Foundation Trust
Centre for Eye Research Australia
Save Sight Institute
UCL Institute of Ophthalmology
Vagelos College of Physicians and Surgeons
Fudan University
Peking Union Medical College Hospital
Sydney Hospital and Sydney Eye Hospital
Chinese University of Hong Kong
Faculty of Medicine, Chulalongkorn University
Tan Tock Seng Hospital
JEC Eye Hospitals and Clinics
Dr Agarwal Eye Hospital
OasisEye Specialists
East Avenue Medical Center
Gleneagles Medical Center Penang
Camden Medical Centre
Ramathibodi Hospital
Siriraj Hospital
Tilganga Institute of Ophthalmology
STU-CUHK Joint Shantou International Eye Center
The First Affiliated Hospital of Xiamen University
Peking University Third Hospital
Graduate School of Medicine
Lee Kong Chian School of Medicine
Seoul National University Bundang Hospital
Duke-NUS Medical School
University of Western Australia, Centre for Ophthalmology and Visual Science
Beijing Tongren Hospital, Capital Medical University
National Taiwan University Hospital
Makati Medical Center
Universitas Gadjah Mada
Universitair Ziekenhuis Gent
National Hospital Organization Tokyo Medical Center
Faculty of Medicine, Chiang Mai University
Chang Gung Memorial Hospital
National University Hospital
Hospital Canselor Tuanku Muhriz UKM
Universiti Malaya
NUS Yong Loo Lin School of Medicine
University of Melbourne
Medical Research Foundation, Chennai
Singapore Eye Research Institute
Sun Yat-Sen University
Samsung Medical Center, Sungkyunkwan university
Moorfields Eye Hospital NHS Foundation Trust
Centre for Eye Research Australia
Save Sight Institute
UCL Institute of Ophthalmology
Vagelos College of Physicians and Surgeons
Fudan University
Peking Union Medical College Hospital
Sydney Hospital and Sydney Eye Hospital
Chinese University of Hong Kong
Faculty of Medicine, Chulalongkorn University
Tan Tock Seng Hospital
JEC Eye Hospitals and Clinics
Dr Agarwal Eye Hospital
OasisEye Specialists
East Avenue Medical Center
Gleneagles Medical Center Penang
Camden Medical Centre
Corresponding Author(s)
Other Contributor(s)
Abstract
Purpose: The objective of this paper is to shed light on the current landscape of genotyping practices, phenotyping practices and availability of essential vision rehabilitation management for inherited retinal diseases (IRD) in the Asia-Pacific (APAC) Region. Methods: The 62-item questionnaire was distributed electronically via email. The questions covered five domains: (1) structure of the IRD service and registry/database; (2) genotyping practices; (3) genetic counselling; (4) deep phenotyping practices; (5) low-vision rehabilitation services. Results: The survey was completed by 36 of 45 centres in twelve countries and regions in APAC. Among these centres, 42 % reported managing more than 1000 patients. Notably, 39 % of centres lack an IRD database or registry, and 44 % of centres have tested less than one-quarter of their IRD patients. The majority of centres (67 %) do not have genetic counsellors. While there was consistency in the imaging-based investigations, there was marked heterogeneity for functional testing using electrophysiology and formal perimetry. Only 34 % of centres confirmed the availability of access to low-vision assistive devices. Conclusions: This study reveals several critical gaps in managing IRDs in the APAC region. These include the lack of IRD database/registry in one-third of centres, a substantial proportion of patients remaining genetically undiagnosed, and limited availability of genetic counsellors. The findings also underscore a need to harmonise investigations for evaluating retinal function and identify areas for improvement in the provision of low-vision rehabilitation services.