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Ophthalmic registries for rare eye diseases
Mohita Sharma1, Neha Jain2, Vibha Singh1
1Department of Ophthalmology, Tirupati Eye Centre, Noida, Uttar Pradesh, India.
Indian Journal of Ophthalmology
|July 6, 2022
Summary
Establishing rare eye disease registries is crucial for patient support and research. These registries will create vital databases, improving access to treatments and facilitating epidemiological studies for rare genetic eye conditions.
Area of Science:
- Ophthalmology
- Genetics
- Public Health
Background:
- Rare diseases affect 6%-8% of the population, predominantly with genetic origins.
- Rare eye diseases present significant challenges in diagnosis, treatment, and rehabilitation.
- Limited patient numbers hinder epidemiological studies and understanding of disease progression.
Purpose of the Study:
- To highlight the critical need for rare eye disease registries.
- To explore the advantages of registries for patients and researchers.
- To review existing rare eye disease registries globally.
Main Methods:
- A systematic review of existing rare eye disease registries was conducted.
- Databases searched included Google and PubMed.
- The review focused on registry methodology, services, applications, and benefits.
Main Results:
- Few rare eye disease registries currently exist worldwide.
- No registries were identified specifically for rare eye diseases in India.
- Registries offer patient support networks, rehabilitation access, and clinical trial opportunities.
Conclusions:
- Rare eye disease registries are essential for advancing research and patient care.
- Establishing registries can overcome data limitations and improve disease management.
- There is a significant gap in registry infrastructure, particularly in India.
