Comments on: Ophthalmic registries for rare eye diseases

Alexandra L. Farrall, Mark H.B. Radford, Justine R. Smith

Research output: Contribution to journalLetterpeer-review

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Abstract

We read with interest the systematic review by Sharma et al. that highlighted the value of rare disease registries as important clinical and research resources to attain better patient outcomes. As the authors report, there are few rare eye disease registries: they identify a total of 26 registries, of which almost half are devoted to hereditary diseases. Notably, most registries are nationally based and have been established in high-income countries or regions spanning western Europe, the United Kingdom, and North America. We agree there remains an unmet need for registries that have international reach for a broad spectrum of rare eye conditions. To this end, we recently established the International Vitreoretinal B-Cell Lymphoma Registry. This multinational initiative, which was not included in the author’s list of rare eye diseases, aims to provide the medical and general communities with real-world information about outcomes of standard diagnostic and therapeutic practices. Vitreoretinal lymphoma affects an estimated one in two million persons annually, typically older adults. Its etiology is unknown, and it may occur as an isolated—or primary—condition, or in association with primary central nervous system lymphoma...
Original languageEnglish
Pages (from-to)1055-1056
Number of pages2
JournalIndian Journal of Ophthalmology
Volume71
Issue number3
DOIs
Publication statusPublished - Mar 2023

Keywords

  • Ophthalmology
  • rare eye diseases
  • rare eye disease registries

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