KnowTheGlow recently met with Marcia Zondervan, leader of the VISION 2020 LINKS & Networks Programme at the International Centre for Eye Health, London School of Hygiene & Tropical Medicine, and her colleague Claire Walker. We were excited to discuss the Retinoblastoma Network (Rb-NET), a unique global collaboration of centers that diagnose and treat children with retinoblastoma globally. By the end of the call it was clear that there was a wonderful opportunity for KTG and Rb-NET to partner in a collaborative effort aimed at amplifying their impact. Both KnowTheGlow and Rb-NET look forward to uniting their strengths to tackle the pressing global challenges of retinoblastoma in LMIC and beyond.
The duo from London were attending this year’s ISOO (International Society of Ocular Oncology) conference in Mombasa, Kenya, which was back-to-back with the COECSA Congress (College of Ophthalmology of Eastern, Central and Southern Africa).
The meeting served as an opportunity for Megan to delve deeper into Rb-NET’s mission and for the three visionaries to explore potential avenues of collaboration. It was an eye-opening experience, filled with insights and shared dedication to improving the lives of children facing this sight- and life-threatening challenge around the world.
Marcia eloquently explained the history of the LINKS Programme at ICEH and the Rb-NET’s origins, stemming from the urgent need to identify and treat children with retinoblastoma (Rb) in low-income countries. Funded by the Queen Elizabeth Diamond Jubilee Trust, the initial eight country teams met together for the first time in India in 2017 and began to identify key steps required to address the tragic loss of sight and life from Rb in low-income countries, especially in Africa.
Capacity-strengthening in low-income countries to save the lives of children with Rb
The initial Rb-NET gathering focussed on identifying the specific needs in the partner countries in Africa and planning capacity-strengthening exchange visits between its partners in low-income countries and those in high-income countries, including the UK, USA and Europe. Key to sharing learning was the involvement of expert centers in India as partners. In India they regularly see children who present with advanced disease and are familiar with the difficulties in treating this dreadful disease when it reaches its late stages. Advanced Rb is now only very rarely seen and treated in high-income Western countries because it is identified and treated early, while it is still curable.
The Rb-NET members also identified the need for a resource manual to assist Rb specialists in planning and developing care for these children in low-income countries and began to work on this at the workshop, based on the actual needs in the field.
Multi-center research providing insights into global inequity in survival
Marcia explained to Megan that there was also a great enthusiasm in Rb-NET to participate in multi-country research to address the key research questions. The Rb-NET benefited from the huge interest in research shown by Didi Fabian, an ocular oncology specialist from Israel. Out of these discussions emerged critical questions: What was the global situation, particularly in Africa? Did it differ from Western countries? This led to the formation of a research group, the Global Retinoblastoma Study Group, spearheaded by Didi, with a mission to uncover the situation.
The first research carried out by the Group was published in the prestigious journal JAMA Oncology in 2020. This encompassed data provided by 278 treatment centers in 153 different countries across the world. Astonishingly, over half the new cases presenting worldwide in 2017 were included in this study.
Using the data shared by centers across the globe, the team was able to show the profound inequity in survival of children depending on the national income level of their country of residence. In high-income countries, death from retinoblastoma is rare, whereas in low-income countries the estimated three-year survival is just over 50%. The researchers found that children living in a low-income country are 16 times more likely to die of retinoblastoma within three years of diagnosis than children from high-income countries.
They plan to repeat this study in 2024, expanding to include an impressive 380 centers. It is clear that retinoblastoma is a rare disease that requires collective might and evidence to address effectively through influencing national policies and strengthening diagnosis and treatment expertise and capacity.
Innovative discussion meetings with global experts – MDTs
Rb-NET has established an innovative approach to sharing learning which involves creating an expert panel that meets online to discuss specific cases and provide support. The Rb-NET MDT project was established: a series of Multi-Disciplinary Team (MDT) meetings comprising all the areas needed to treat Rb – oncologists, ophthalmologists, histopathologists, nurses and counselors – meeting together as a whole country to address the issues posed by their patients. The MDT meetings benefit from experts in all these fields – from the USA, UK, India, Europe and Israel – giving their time and expertise to discuss and advise their counterparts in low-income countries.
This collaborative approach ensures that hospitals within specific countries can share their cases and receive expert guidance, ultimately improving the chances of effective treatment. In 2022, 17 national Rb-NET MDTs were held – in Cameroon, Ghana, Nigeria, Kenya, Uganda, Tanzania, Malawi, Indonesia and Iran.
Zoom has played a pivotal role in enabling these collaborations, proving to be an invaluable tool for knowledge exchange. The impact of these Rb-NET MDTs has been nothing short of transformative, shedding clear light on the treatment needs of individual patients within the specialist centers, assisting the clinicians who are desperate to save these children’s lives.
Capacity-strengthening and advocacy working together to improve the outcome for children with Rb
In Kenya, as with many countries in sub-Saharan Africa, there is a pressing need for Rb support. While the primary focus is on understanding what resources the country requires, we recognize the challenges faced by the healthcare system. The Ministry of Health in Kenya faces financial constraints, but there is a clear and concerted effort to identify and mobilize support to provide resources to the local doctors treating children in dire need.
Dr. Kahaki Kimani, a key figure in this endeavor, strives to identify and address the specific needs of these children in Kenya and looks for solutions. They have an Rb-NET partnership with LVPEI, India and join the Rb-NET MDTs also. They have also worked with institutions like the Hospital for Sick Kids in Toronto and Moorfields Eye Hospital in London. Incorporating EVERYONE is essential to provide solutions.
The Rb-NET doesn’t stop at knowledge sharing; it’s about creating lasting solutions. Next year’s COECSA conference in Zimbabwe could provide a platform for African colleagues involved in Rb-NET MDTs to be able to share their progress since 2017 and discuss the way forward. Central to these discussions is also the development of generic Rb guidelines that each country can adapt and use, in collaboration with their respective Ministries of Health.
Rb-NET is quick to highlight the importance of including Ministries of Health in all country efforts, recognizing that lasting change requires cooperation on multiple fronts. This collaborative spirit extends to fostering partnerships with organizations like the International Society of Ocular Oncology (ISOO) and the College of Ophthalmology of Eastern, Central and Southern Africa (COECSA).
The goal is to have the ISOO conference return to Africa every other year, fostering more conversations and expanding knowledge, resources and support. Rb-NET emphasizes that it’s not just about having surgical equipment and the necessary medical treatments in place; but rather ensuring these are accompanied by training, awareness-raising and financial support, international and national, to ensure sustainable solutions.
Looking forward to a brighter future
Looking ahead, Marcia and Claire envision a future where programs like KnowTheGlow can be seamlessly integrated into their initiatives. KTG’s dedication aligns perfectly with Rb-NET’s mission to improve the lives of children facing sight-threatening eye conditions worldwide. Marcia, Claire, Megan and Helene discussed ideas about how Rb-NET can assist in connecting KTG with local teams to initiate a Stakeholders Workshop as part of our initial preparation when looking to build Glow Awareness within a new country. The possibilities are exciting and the shared goals are clear.
The meeting between Megan Webber, Marcia Zondervan and Claire Walker has underscored the importance of collaboration in the quest to improve children’s eye care globally. Rb-NET’s dedication to fostering partnerships, sharing knowledge, and empowering nations is a testament to what can be achieved when individuals and organizations unite for a common purpose: to provide brighter futures for children facing sight-threatening eye conditions around the world. The road ahead is long, but with these dedicated individuals and their shared vision, progress is happening and solutions are waiting just around the bend.
We are honored to add Rb-NET to our list of partners and look forward to sharing more about their ongoing work worldwide!
