Global retinoblastoma outcome study

Namate-Nyirenda, Chinsisi

Global retinoblastoma outcome study

Date

2021-05-21

Authors

Namate-Nyirenda, Chinsisi

Publisher

Kamuzu University of Health Sciences

Abstract

approximately 1 in 17,000 live births, is a disorder initiated by mutation of the RB1 gene. The cancer, which is thought to originate in a photoreceptor precursor cell, develops in early childhood, may be heritable or non-heritable, and involves one or both eyes. Untreated, Retinoblastoma is fatal by spread to the central nervous system (via the optic nerve) and/or by haematogenous spread. In 2017, data was collected to report the clinical presentation and management of patients with Retinoblastoma from 278 treatment centers worldwide. It is now 3 years since this data was collected and it is time to collect the 3-year outcome data of the 2017 cohort of patients. Study design: Longitudinal cohort study The broad objective of the study to investigate the outcome of 4,351 patients that were diagnosed with Retinoblastoma in 2017 in 278 treatment centers across the world. The specific objectives are: 1. To investigate the 3-year outcome of patients with Retinoblastoma who were diagnosed in 2017, treated and monitored thereafter in local centers across the world. 2. To investigate the eye survival rate and patient survival rate. 3. To analyze these outcomes by national-income level. 4. To investigate the rate of treatment abandonment and analyze it by national income level. Study period: 10 months This study will be conducted in 278 worldwide and specifically at Lions Sight First Eye Hospital, Blantyre for the Malawi chapter. The files of children who presented with Retinoblastoma in the period of interest will be extracted from the HMIS department. The documented demographics, treatment and outcome will be recorded in the data collection sheet. It is expected that most outcomes will be difficult to extrapolate from the files so patients will have to be called to establish the outcome. A written report will be submitted to the Queen Elizabeth Center Hospital Ethics Committee and the College of Medicine Research and Ethics Committee (COMREC), College of Medicine Library and LSFEH Clinical Director.