While retinoblastoma is the most common pediatric intraocular malignancy, it is still a relatively rare malignancy. According to the latest estimations, only 8,000 new cases of retinoblastoma are diagnosed every year. Consequently, data concerning malignancy is scarce.
Retinoblastoma can be fatal if left untreated, so early diagnosis can save both a child’s life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. Realizing that the clinical presentation of retinoblastoma has never been assessed on a global scale, Dr. Ido Fabian from the Goldschleger Eye Institute at Sheba Medical Center initiated a border-crossing collaboration between 278 retinoblastoma treatment centers for the purpose of advancing a cross-sectional analysis of treatment-naive patients with retinoblastoma.
Today, the aptly named Global Retinoblastoma Study Group is one of the most extensive global cooperation programs in medicine, and incorporates most of the dedicated retinoblastoma treatment centers from around the world, including centers from Iran, Saudi Arabia, Libya, Yemen, Lebanon, Pakistan, Afghanistan and other countries that traditionally avoid contact with Israel and Israeli institutions.
In an unprecedented achievement, the Global Retinoblastoma Study Group managed to gather data on 4,351 new patients diagnosed in 2017, estimated to be more than half of all new retinoblastoma cases worldwide in 2017.
According to a study recently published by the group, current data from European countries demonstrate a higher estimate of the incidence of retinoblastoma than what has been reported for previous periods. The study concluded that the incidence of retinoblastoma has likely increased because of improved survival rates of patients attributable to more effective treatments, which appears to be the first time a selection relaxation effect of therapeutic intervention for a lethal disorder is evident after only a few generations.
Besides advancing research, the cooperation between retinoblastoma treatment centers from around the world contributed to other international collaborations, including the establishment of the Retinoblastoma Network (Rb-NET), founded by Dr. Fabian along with Dr. Rachel Shemesh and Dr. Ofri Berar Vorobichik from Sheba Medical Center. Rb-NET works to improve survival, salvage the eye, preserve vision and improve the quality of life of children diagnosed with retinoblastoma in remote and rural areas and developing nations. This is achieved by improving cooperation between health centers around the world and enabling effective dissemination of knowledge on retinoblastoma through an educational platform.