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

Wendy M Wong¹, Yih Chung Tham², Matthew P Simunovic³

¹Centre 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.

Asia-Pacific Journal of Ophthalmology (Philadelphia, Pa.)

|January 17, 2024

Summary

A new Asia Pacific Inherited Eye Disease network addresses knowledge gaps in hereditary ocular conditions. This collaboration aims to improve genetic diagnosis and patient care for inherited retinal diseases (IRDs) across the region.

Keywords:

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

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Area of Science:

Ophthalmology
Genetics
Public Health

Background:

Significant knowledge gaps exist regarding hereditary ocular conditions in the Asia-Pacific population, representing 60% of the global population.
There is a critical need for regional collaboration to advance understanding and treatment of these conditions, leveraging precision medicine.

Purpose of the Study:

To establish a collaborative network focused on inherited eye diseases within the Asia-Pacific region.
To prioritize inherited retinal diseases (IRDs) due to a lack of detailed characterization and registries.

Main Methods:

Formation of a multi-national, multi-center collaborative network fostered by the Asia-Pacific Academy of Ophthalmology and the Asia-Pacific Society of Eye Genetics.
Involvement of renowned institutions and experts specializing in inherited eye diseases.

Main Results:

The network includes 55 members from 35 centers across 12 countries and regions in the Asia-Pacific.
The steering committee comprises experienced ophthalmologists, vision scientists, and ophthalmic geneticists.

Conclusions:

The Asia Pacific Inherited Eye Disease (APIED) network will enhance genotyping for early and accurate genetic diagnosis of IRDs.
The network aims to harmonize phenotyping practices and establish federated disease registries for improved patient care and research.