Global Retinoblastoma Presentation 2017

Retinoblastoma (Rb) outcomes have improved significantly in recent years in high-income countries thanks to many factors, including the introduction of new treatment modalities, decoding of the genetic basis of the disease, development of specialized centres, creation of awareness campaigns, screening programs and referral pathways, resulting with nearly 100% survival rate. However, in low- and middle-income countries, where over 80% of global Rb disease burden lies, survival figures may be 50%, or even lower.

The Retinoblastoma-Network (Rb-NET; http://cehc.lshtm.ac.uk/dr-links/rbnet/) is a consortium of Rb centers from the UK, India and 4 countries from Sub-Saharan East Africa (Tanzania, Uganda, Kenya and Malawi). Its goal is to improve the outcomes of children with Rb in the African countries.

Recently, the Network's research initiative has launched a study on Rb presentation – Global Retinoblastoma Presentation 2017, aiming to investigate and analyze the presentation mode of treatment-naïve Rb cases diagnosed across the world during 2017. Since June 2017 centers are being located and asked to join this global collaboration (Figure; in red). Since January 2018 data is being submitted and added to the pooled global data (Figure; in blue), which already comprises over 1/4 of the estimated global incidence of Rb during a calendar year (~8,000 children). Analysis will be done according to the national income level as well as by continent. Being a multinational global collaboration, the study was recently endorsed by the ISOO leadership. We are hoping by the end of the year to have most newly diagnosed children enrolled. Results of this study will be summarized in a report that will be used to influence funding and policies in respect of global Rb management.

Ido Didi Fabian and Richard Bowman

Global Retinoblastoma Presentation 2017

Retinoblastoma Research Network

International Centre for Eye Health

London School of Hygiene and Tropical Medicine

London

UK

 

Association Management Software by X-CD Technologies Inc.