Retinoblastoma project in sub-Saharan French speaking Africa - Early detection and support for treatment
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Program: Adult Oncology
Coordinators: Pierre Bey
Other INCTR Participants:
Collaborators: Institut Curie, Paris
GFAOP
Association Retinostop
Fondation Sanofi-Espoir
Branch(es): AMCC, INCTR French branch
Location: Single Continent
Country(s): Mali, Democratic Republic of Congo
Institutions: Hôpital du point G and IOTA, Bamako
CHU Lubumbashi
Background Information: Bulletin du Cancer. Volume 100, Number 2, 161-5, Février 2013, Synthèse

Retinoblastoma (RB) is a rare embryonic tumour that represents 1/16,000 births in France. In Mali, a study showed the characteristics of a hospital series of cases seen in Bamako in the Pediatric Oncology Unit of Gabriel Touré Teaching Hospital and in the Tropical Ophthalmology Institute of Africa (IOTA) between January 2005 and June 2007. Median age was 4 years versus 2 years in France for unilateral disease. Near two third of children with RB had extra-ocular extension at diagnosis, which is now exceptional in France. Only 11% were bilateral versus 35% in France. Cure rate was around 50%, but it is estimated only on the cases arriving in Bamako and with at least 20% lost of follow-up. Cure rate is over 95% in France within an exhaustive register. RB appears as an exemplary tumor and rapid improvements could be obtained in low-income countries with relatively limited means. This is why, the Alliance mondiale contre le cancer (AMCC), the Institut Curie in Paris, which is the reference center in France for RB, and teams in Bamako were proposing a program to help the development of early diagnosis, treatments, including eye preservation, and rehabilitation of children with RB in sub-Saharan Africa in collaboration with the Groupe franco-africain d’oncologie pédiatrique (GFAOP). The official launching of this program was held in Bamako November 4 th, 2011 for Mali and the surrounding regions. After this first experience, this program is now implemented in other countries.
Objectives: The program is aiming to improve early diagnosis in order to save vision and improve survival rates of children with retinoblastoma. In Mali, the objective is to double the current
survival rate of 40%.
Methods: The program extends from early diagnosis
to rehabilitation; it also includes public awareness actions and training for medical and
paramedical personnel, so that the cancer,
which occurs most frequently in very young
children, can be detected and treated early. Disease management is also facilitated.
Progress: Mr Ibrahima Sory Magassa, ocularist (an ocular prosthetic technician) at the Institute of Tropical Ophthalmology of Africa (IOTA) in Bamako, was invited to complete his training in Paris with PROTHELEM in June 2012.

Training mission in the department of ophthalmology at the Institut Curie
From July 7th to 22nd, 2012

Dr. Fatoumata Sylla, ophthalmologist-pediatrician at IOTA (Bamako, Bali) conducted a training mission in the department of ophthalmology run by Dr. Laurence Desjardins at the Cancer Hospital at the Institut Curie (Paris, France). This mission was developed as part of the early diagnosis of retinoblastoma program in low-income countries, lead by the Alliance Mondiale contre le Cancer (AMCC) since 2011. The goal of this mission was the introduction to the techniques of chemo-laser in the framework of the management of intraocular retinoblastoma forms. This program includes various components, including the training of local technical staff in order to initiate conservative treatment of retinoblastoma intraocular cases.


Expansion of AMCC’s retinoblastoma program to the Democratic Republic of Congo
From December 3rd through the 6th, 2012, Professor Pierre Bey, Medical Director of the Alliance Mondiale Contre le Cancer (INCTR’s French Branch) and two colleagues from France involved in the care of children with retinoblastoma visited Lubumbashi in the Democratic Republic of Congo (DRC). The purpose of their visit was to launch the retinoblastoma program for the early diagnosis, treatment and rehabilitation of children with this cancer.

This is the second reference centre established in sub-Saharan Africa (Bamako was the first - for further information click here) in a collaboration between AMCC and the local unit of the French-African Pediatric Oncology Group (GFAOP). Discussions were held with the heads of the ophthalmology unit, of the pediatric oncology department and of the anatomic pathology services of DRC. The mission also provided an opportunity to meet with the Health Minister of Katanga, Dr Augustin Ilunga, who expressed his strong support. The Ministry will contribute to the project by delivering messages to health professionals and the general public about the early signs of retinoblastoma.

On December 5th, a retinoblastoma conference was held and presentations were provided to an audience of 250-300 participants. The faculty was comprised of Pr Laurence Desjardins, Dr Robert Lukamba, Prof. Pierre Bey and Mr Pascal Sirignano and topics included: epidemiology, early diagnosis, staging, treatment, post-treatment surveillance, radiotherapy and ocular prostheses.
Future Plans: Next program will be developed in Ivory Coast, Senegal, Mauritania and other sub-saharan african countries thanks to the support of the My Child Matters Programme (Fondation Sanofi-Espoir)
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Last Update: April 2013
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