Retinoblastoma Projects
Improving Early Diagnosis, Treatment and Rehabilitation of Children with Retinoblastoma in French-speaking sub-Saharan Africa
This project is being undertaken by AMCC (INCTR’s French Branch) in collaboration with the Ophthalmology Unit of the Curie Institute in Paris. This project has been on-going since November 2011 when it was launched in Bamako, Mali. The project is largely supported by the Fondation Sanofi-Espoir along with other sources of support. Drugs for the treatment of children with retinoblastoma are provided by GFAOP. The program is underway in Mali, Democratic Republic of Congo, Côte d’Ivoire, Senegal and Madagascar.
The major achievements of this project to date include
- Complete remission in 80% of children presenting with early stage retinoblastoma in Mali.
- Conservative treatment with thermo-chemotherapy was introduced in 2014 with success.
- All children who required an enucleation have benefited from having a prosthetic eye.
- Training of ophthalmologists at the various centers in participating countries has been provided by the Institute Curie.
- Training has been provided in France (Prothelem, Paris) in the fabrication of prosthetic eyes.
- A research project with the Department of Pathology at Bamako, the Institute Curie (Paris, Franc) and the Garrahan Hospital (Buenos Aires, Argentina) has been undertaken with the goal of identifying genes involved in the development and progression of retinoblastoma – including both cases that were diagnosed early and those diagnosed at later stages.
- Establishment of a network related to retinoblastoma for French-speaking sub-Saharan African countries – the first meeting of the group was held in 2015 at the Institute Curie in Paris, France.
- Presentation of achievements to date at international meetings such as AORTIC.
For more information about this program, contact: contact@cancer-amcc.org
Improving Early Diagnosis and Treatment of Children with Retinoblastoma in Brazil
This project is being conducted by INCTR Brazil and its partner TUCCA. It has been on-going since 2011. The main objective is to save the eyes and lives of children affected by retinoblastoma.
The major achievements of this project to date include
- Participated in the INCTR multi-institutional and multi-national questionnaire study of parents of children with retinoblastoma to understand problems that they encountered prior to diagnosis. INCTR Brazil and TUCCA continue to use the questionnaire to interview parents.
- Created a video about the signs of retinoblastoma that has been translated into multiple languages. In Brazil, it encourages parents to call a “hot-line” if they suspect that their child has signs of retinoblastoma.
- Successfully lobbied the Brazilian government to create a National Retinoblastoma Awareness Day (September 18th). Many famous monuments, such as the Christ the Redeemer statue in Rio de Janeiro, to cease lighting at night time to emphasize the blindness that can be caused by retinoblastoma. Other events are held in the country to raise public awareness.
- Developing newer approaches to treating children with advanced intraocular disease in order to preserve the eyes.