Retinoblastoma
Strategy Group Meets

The Retinoblastoma Strategy Group convened in January to develop a multi-national program for retinoblastoma. Investigators from institutions in Brazil, Bolivia, Mexico, Turkey, Saudi Arabia, India, and the Philippines met in Brussels to set a course of action that promises to improve early detection and to provide a common treatment protocol for retinoblastoma in developing countries.

Members of INCTR's Retinoblastoma Strategy Group are working to improve early detection of retinoblastoma in developing countries. Pictured at top are: Clelia Erwenne (Brazil), Sidnei Epelman (Brazil), Anslim Narinesingh (INCTR), Shripad Banavali (India), Carlos Leal (Mexico), Ian Magrath (INCTR), Yolanda Ernst (Bolivia), and Laxman Arya (India). At bottom: Melissa Adde (INCTR), Amani Al-Kofide (Saudi Arabia), Kamer Uysal (Turkey), Nurdan Tacyildiz (Turkey), and Emel Cabi Unal (Turkey).

Each investigator presented information about the incidence of retinoblastoma and the problem of late presentation within their own country. All of them observed that the majority of patients present to their centers with advanced stages of the disease. Factors contributing to late presentation include:

• inability of primary health care providers to recognize the significance of patient symptoms;
• inability of ophthalmologists to make the diagnosis, often due to failure to perform the required eye examination (fundoscopic examination under anesthesia);
• lack of patient referral systems and lack of experts to treat children with this disease;
• lack of public awareness;
• lack of family financial resources; and
• fears of the treatment itself, particularly removal of the eye.

The group decided to collect more information about the problem of late presentation. A questionnaire will be administered to parents of children who are about to start treatment at participating centers.

The group also agreed that educational materials need to be developed for three audiences—the public, primary health care workers, and ophthalmologists. Posters intended for the public could be displayed in areas where people are most likely to see these materials (i.e., well-baby clinics, schools, bus stops, shops) while posters and brochures for health care professionals could be displayed at professional society meetings.

The strategy group also agreed to develop a common protocol for the treatment of patients with advanced retinoblastoma. A sub-committee is designing a proposed treatment schema. This will be circulated this spring and after objectives, patient eligibility criteria, treatment, and evaluation parameters are agreed upon, the group will draft a formal protocol document by October 2001.