Retinoblastoma Registry


Retinoblastoma (RB) is the most common intraocular malignant tumour encountered in children. Without early diagnosis and proper treatment, RB results in visual impairment or blindness. Untreated, the disease is fatal. With early diagnosis, eyes and lives can be saved for all affected.

RB affects between 1 in 14,000 to 1 in 20,000 live births depending on the country. Currently, there are no data available on the incidence, prevalence and diseases characteristics of RB in Malaysia. This registry is developed to have database on the magnitude and pattern, as well as mode of treatment and outcome of RB in Malaysia.


Objectives of RB Registry


To determine the incidence and distribution of retinoblastoma in different states in Malaysia


To determine the ethnic specific prevalence of retinoblastoma in Malaysia


To study characteristics of RB patients in terms of clinical presentation, diseases stages based on International Intraocular Retinoblastoma Classification


To evaluate types of treatments and monitor treatment trends


To evaluate treatment outcomes including complications related to treatment




All ophthalmology departments at MOH and university hospitals are invited to participate in this retinoblastoma registry.
Inclusion criteria: All patients who were diagnosed to have retinoblastoma.


Downloadable Data Collection Form

1. Retinoblastoma Registry Form  (PDF 70 Kb)

1. Data Definition (PDF 158 Kb)


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is a disease clinical database, designed as a prospective, ongoing systematic collection of data pertaining to specific visual threatening eye diseases, such as cataract, diabetic retinopathy, glaucoma, contact lens related corneal ulcer, and outcome of cataract surgery.