In 2017, Dr. Ido Didi Fabian had just completed a three-year fellowship in Ocular Oncology at the London School of Hygiene & Tropical Medicine. Wanting to take a deep breath and slow down his pace, he decided that he would take his family the long way back home to Israel in an old Volkswagen camper; but, little did he know, that his family adventure home would in actuality become the start of a new and far-reaching adventure. Megan Webber, the Co-Founder of KnowTheGlow, learned that Dr. Fabian’s potential 2-month-long journey home was sidelined in Norway when he received an email from Dr. Ashwin Reddy (Lead Clinician for Ophthalmology and Retinoblastoma, Royal London Hospital) inviting him to join the Rb-NET (part of the London School of Hygiene & Tropical Medicine https://www.rb-net-mdt.org). Dr. Fabian was not familiar with the Rb-NET but was intrigued having been asked to join a workshop led by the world-renowned ophthalmologist, Dr. Allen Foster (https://www.iapb.org/connect/members/vision-excellence-awards/vision-excellence-awards-allen-foster/) in Hyderabad. He left his family in Berlin and hopped on a flight to Hyderabad to join this conference which would bring oncologists, pathologists, and ophthalmologists together from Eye Centers around the world including London, Birmingham, India, Malawi, Tanzania, Uganda, and Kenya. The roundtable elicited incredible discussions and for the first time, Dr. Fabian heard about the remarkable disparity of retinoblastoma case presentation in low-income countries. In general, Dr. Fabian explained that much of what we know about the clinical aspects of retinoblastoma presentation comes from North America and Europe (which only accounts for about 8-9% of global incidence). The majority of retinoblastoma cases originate in Asia and Africa and account for more than 80% of global incidence (due in part to large populations and higher birth rates there). The incidence of retinoblastoma holds constant at 1 in 15,000-20,000 live births throughout all regions.
Dr. Fabian explained to Megan that it is not difficult to calculate the absolute number of retinoblastoma cases across the world. If you have information on the birthrate and the size of the population you will find that there are roughly 8,000 new cases of retinoblastoma each year around the world. Dr. Fabian went on to describe the grim reality that while in high-income countries the rate of family retinoblastoma is 10%, it is only ~3% in low and middle-income countries due mostly to the fact that children there are not surviving the diagnosis of retinoblastoma, and are not surviving to childbearing age. On the other end of the spectrum, the incidence of familial retinoblastoma is on the rise in Europe due to early detection, treatment, and the high survival rate there allowing these children to grow to have children of their own. In this way the generic pool in advanced countries is growing.
When Dr. Fabian was appointed to be the principal investigator for the Rb-NET, there was great motivation, but no specific research question. Dr. Fabian remembered hearing Dr. Allen Foster at the Hyderabad conference say that the people present at the roundtable represented one-quarter of new cases around the world. Dr. Fabian was deeply impacted by that reality. He pondered to himself, if that is true, why not work together to “conquer the world” and reach out and recruit as many centers as possible? He started in Africa and then moved to Europe. After signing up a critical number of centers he then reached out to centers in the US. It took about 18 months to recruit 278 retinoblastoma treatment centers from most countries around the world. These centers shared important clinical data on 4,351 patients; more than half of the world’s cases annually.
Dr. Fabian explained that in order for the study to work it needed to be simple. Not wanting to ask for too much data, he kept the information limited to presentation date, sex, age of presentation, left or right eye, etc. By keeping the request simple, it was easy for the centers to cooperate. The Rb-NET published this initial study in JAMA Oncology which responded with unanimous support for the proposed following 3-year outcome study. Dr. Fabian stressed that the most important part of the study was not the publications about the outcome of the study but was instead the creation of this worldwide network of collaborating retinoblastoma centers.
Dr. Fabian recently attended the ISOO (International Society of Ocular Oncology) conference in the Netherlands and was delighted to see that there were two sessions on retinoblastoma; one on the advancements in retinoblastoma diagnosis and treatments and the second on global retinoblastoma. Dr. Fabian was also thrilled to share with Megan that he convinced the ISOO board to hold next year’s conference in Mombasa. This will be the first time the ISOO conference will be held in Africa and he is excited to meet with the African doctors. Dr. Fabian, actually, plans to go to Nigeria in January to work with Dr. Dupe Ademola-Popoola to build an intra-ophthalmic artery chemotherapy center with her there.
Dr. Fabian reiterated that access to care as well as barriers to care are very complex issues with many factors playing a role. He explained that while most international groups are focused on creating centers and setting treatment protocols, early awareness and early education are equally vital. This is true in all countries and while it is difficult to have a positive impact when you are trying to improve the level of parental education, the potential is there and the opportunities are continuing to develop. Dr. Fabian continues to work on his retinoblastoma study. He hopes to repeat the three-year study from 2024-2027. Once again it will be focused on the stage of presentation and will be an outcome study with the goal of increasing the capture rate of global retinoblastoma to more than 50%.
KnowTheGlow is honored to showcase Dr. Fabian’s work and his tenacity along with all the ocular and pediatric oncologists and centers he is collaborating with around the world. We hope that he continues to build his network so that more blindness and loss of life due to retinoblastoma is prevented across countries far and wide. ( to read more about Dr. Didi Fabian’s study- https://www.thelancet.com/action/showPdf?pii=S2214-109X%2822%2900250-9 and https://jamanetwork.com/journals/jamaoncology/fullarticle/2761957)
