United Against Retinoblastoma: The Importance of Global Data and Collaboration

Monday November 6, 2023

Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all.  Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.

Three speakers are seated to the left of frame under a large banner showing the ISOO 2023 Africa logo. To the right, a speaker stands at the podium. A digital panel on the podium declares she is Patounezambo Mariam Ouedraogo from the Ivory Coast. The logo filling the background is coloured in shades of blue, red, and magenta, bright and bold against a cheerful yellow background. In the bottom right corner, a table display of yellow and cream flowers and green foliage contrasts well against the pinks of the lower right logo.

A panel session during the first meeting of the International Society of Ocular Oncology (ISOO) in Africa, held in Mombasa, Kenya, in August 2023. Supporting knowledge exchange and collaboration across the continent.

Why Do We Need Global Data and Collaboration?

We know the signs. A newborn child with a white pupil. A 10-month-old with a new wandering eye. A routine child exam at the eye doctor that turns grim.

Retinoblastoma (Rb) is the most common eye cancer found in children across the world. A disease that is potentially curable if caught early, but deadly if discovered or treated late. In our daily lives, certain words have the remarkable ability to elicit profound emotional and even physical responses. Among these, “cancer” undoubtedly holds a significant place.

Each new retinoblastoma diagnosis in a child is heart-wrenching. Which is why we must continue to explore new ways to combat this devastating disease.

Our understanding of retinoblastoma has radically evolved over the past century. Thanks to the medical community and many passionate and talented people, this cancer which used to be treated only by removing the eye can now be treated with more complex things like targeted chemotherapy directly to the eye.

Retinoblastoma is a childhood cancer found all over the world. We see roughly eight thousand children develop Rb every year. That’s about 1 in 17,000 live births. However, the way retinoblastoma presents is different all over the world. Some children have cancer in both eyes, most only in one. Many have very advanced disease. Many don’t have a lot of options for survival.

Every year, we get better at fighting retinoblastoma. We find new and creative ways to detect the disease early, as well as innovative methods to treat the cancer. A lot of our success has come through developing research and universal collaboration.

The Global Retinoblastoma Study Group

The Global Retinoblastoma Study Group (GRSG) was founded in 2017 by Prof. Ido Didi Fabian and is comprised of 150 countries, with the purpose of studying retinoblastoma from many different countries across the world.

When you take a rare cancer like Rb, you are bound to come across very serious differences in the way this disease is detected and treated. Most of the cases we see of children suffering from retinoblastoma come from low-and-middle-income countries (LMIC).

Thanks to the GRSG, we have been able to share knowledge and expertise among healthcare workers across the globe, promote the spread of latest clinical experiences and research findings, and support global advocacy to raise awareness about retinoblastoma. Overall, the ultimate goal of the GRSG is to improve outcomes and quality of life for all children affected by this cancer.

Moreover, the GRSG has pioneered significant Rb research studies across the world.

The Global Retinoblastoma Presentation and Analysis by National Income Level and The Global Retinoblastoma Outcome Study: a prospective, cluster-based analysis of 4064 patients from 149 countries were very important papers published in the past few years that highlighted the discrepancies in presentation, treatment and outcomes for children suffering from retinoblastoma across the globe.

Illuminating Disparities and Guiding the Way

These papers illuminated the disparities among countries of different economic status. For example, they showed us there is an almost 17 times increased risk of dying from Rb if you live in a low-income country compared to a high-income country. Here is a graph from the original article of the second study published in The Lancet Global Health.

Image showing two bar graphs, one above the other.

The top graph shows the probability of surviving for all children affected by Rb from 2017-2020. As you can see, by three years, 84.5% of children were still alive.

The bottom graph stratified the children by national income level of their country of residence. The top green curve represents high income countries, while the bottom purple curve represents low income. You can clearly see a difference in survival outcomes. At three years, 57.3% of children were still alive from low income countries, while 99.5% of children were still alive from high income countries. That’s a significant difference!

There are many reasons for this large discrepancy. Things like the lack of Rb awareness among healthcare workers and parents, large geographic distances preventing early diagnosis and treatment, not enough specialized ophthalmologists or pediatric oncologists, war zones, funding constraints, family support, and many others.

These papers also showed us many other important differences between economically grouped countries. For example, children with retinoblastoma in high income countries typically present early with mild disease, and have many advanced treatments available. However, in lower income countries, most children present with very late and advanced disease, with less treatment options available.

Therefore, in countries like the United States, United Kingdom and Israel, most children with Rb survive, and treatment is more focused on saving the eye and vision. However, in most of the world – In particular Africa, Asia and South America – treatment is more focused on trying to save children’s lives.

So, where you are born, diagnosed, and treated will determine not only your chances of survival but also what kind of treatment you can receive.

We learned a lot from these very important papers. In a way, they painted a very holistic yet unfair picture of the world. But they also provided us with scientific evidence of where we need to focus our global efforts as we aim to achieve health equity and improve outcomes for all children with retinoblastoma.

Overall, these papers resulted from the collective effort of hundreds of physicians across the world. A truly remarkable example of global collaboration.

If you’re interested in reading these scientific papers, please see the links below:

The Global Retinoblastoma Presentation and Outcome 2024-2027 Studies are the next upcoming big worldwide studies. They will be the world’s test to see if anything has changed since 2017.

As our understanding of retinoblastoma advances, new treatments are becoming available, and global efforts are targeting Rb in underserved countries. We hope we will be able to see major and positive changes in survival outcomes for children worldwide.

Global Collaborations for Life and Sight Saving Care

Collaboration between health care workers, treatment centers and non-profit organizations are key to forming an ecosystem targeted at early detection and improved survival outcomes for children. Without collaboration, there would be no scientific community, no advancements in our understanding of retinoblastoma, and many more children would suffer.

Rb-NET MDT Project

A perfect example of a collaborative group, the Rb-NET MDT Project, was formed by a group of ocular oncologists, pediatric ophthalmologists, pediatric oncologists, pathologists and geneticists across the world. The group hosts monthly multi-disciplinary virtual tumor boards to discuss challenging Rb cases from select countries.

This virtual network allows physicians from certain centers to engage, network and learn from leading specialists in the field.

Visit the Rb-NET MDT Project website

A virtual meeting screen capture show 12 camera panels and diverse participants from around the world.

ISOO Africa Conference

Another unique example of collaboration in Rb was demonstrated at The ISOO Africa conference, recently held in Mombasa, Kenya in August 2023.

This convention brought together a community of ophthalmologists, oncologists, other clinicians, caretakers, researchers, and non-profit organizers, both in person and virtually. Over three days, they discussed the discrepancies and barriers to treating retinoblastoma across Africa, and creative ways to overcome these barriers.

The conference was a great success, with more than 50 countries gathered in one room, most from across the African continent.

A group of people representing diverse ethnic backgrounds are sitting or standing around a table scattered with post-it notes. They are deep in conversation, and several are reaching out to move post-it notes into new positions on the table.

Participants prioritize needs in a working group breakout session led by Susan Ybarra from St. Jude Children’s Research Hospital during the ISOO Africa Conference – Susan Ybarra is not in the photo.

The WHO Global Initiative for Childhood Cancer

Another perfect example of worldwide collaboration. In 2018, the World Health Organization (WHO) launched a massive campaign advocating for increased survival rates in children with cancer by 60% by the year 2030. Visit the WHO website for more information.

While this initiative advocates for all types of pediatric cancers, it focuses primarily on six “index cancers” that represent most of the cancers we see in children worldwide.

As one of these “index cancers”, retinoblastoma serves as a focal point for evaluating whether global efforts are targeting the right places.

The WHO Initiative also developed a unique set of strategies through their CureAll package that will help a specific country or region evaluate its current status on addressing these index cancers, devise a strategy, put the plan into action, and oversee its advancement.

Cover image of the World Health Organization Initiative for Childhood Cancer: An Overview, features a thoughtful looking child, bald from cancer treatment, holding both hands up towards the camera. Red, blue and green paint mix across the child’s palms and splayed fingers. The colours of the image are all light but muted.

Overall, the initiative works on a local, regional and global level, with collaborative efforts from the WHO, national and state governments, academic institutions, nongovernmental organizations (NGOs), advocacy groups for parents, private sector organizations, and philanthropic foundations.

With this support of this initiative, we can truly help more children with retinoblastoma survive across the world. And the upcoming Global Retinoblastoma Presentation and Outcome 2024-2027 Studies will provide us with vital information and scientific data needed to know if we are on the path to achieving these goals. You see how research and collaboration come together?

Building Hope for All

Retinoblastoma is a rare cancer. We already know that. And as we have seen from the global Rb studies, many children die from this curable cancer, with major differences in diagnosis and treatment across the world.

Research and collaboration are crucial to retinoblastoma. They are fundamental in advancing knowledge, improving early detection, treatment options, and providing better care and support for all affected children.

The struggle against childhood eye cancer is ongoing. It’s a battle that demands creativity and innovation. We must persistently seek out fresh strategies, refusing to be deterred by its daunting presence. As the world evolves, so must our methods for tackling Rb, ensuring we remain one step ahead in this enduring fight.

Retinoblastoma is a global effort. And we will succeed.

Aloha One Retinoblastoma World 2024!

Global research collaborations hold huge potential to advance our knowledge and understanding of retinoblastoma, save more lives and improve care for all, for life.  The most insightful and effective collaborations develop in partnership with parent and survivor advocates who live with the daily effects of Rb.

If you would like to join a global community of clinicians, researchers, families, and survivors sharing knowledge and experience, learning from one another, and exploring priority subjects together, we welcome you to the 7th One Retinoblastoma World meeting, October 15-17 2024 in Honolulu, Hawaii.  The meeting will be held just before the International Society of Paediatric Oncology World Congress which takes place 17-20 October, 2024 at the Honolulu Convention Centre.

One Rb World is community, conversation, and cooperation.  Together, we build understanding, partnership and relevant, inclusive actions that address urgent questions and needs – global collaboration for optimal care.  Children welcome too – One Rb World is proud to offer a full child life program!

Visit our One Rb World microsite for more details, get your tickets, and book your group rate hotel room.  We do hope very much to see you in Hawaii and share this unique opportunity with you to advance Rb early detection, care, and support for all!

Sponsorship and partner opportunities are available for businesses, foundations and individuals.  If you are interested in partnering with us to help host this important forum for global collaboration to improve patient care and cure, please email Marissa Gonzalez at marissa(at)wechope.org.

A pink banner with the words “Register Now” spans the top of the image. Diamond Head and Waikiki Beach in Honolulu are bathed in light, under a slightly cloudy blue sky. Along the coastline, gold reflections from the many buildings ripple and merge into the turquoise ocean. The One Rb World logo includes a pink flower for Hawaii. Text reads: “One Retinoblastoma World, Honolulu, Hawaii | October 15-17, 2024.”

You May Also Like…

DePICT the Cancer Care Journey, Overcome Rarity Through Collaborative Research

Brenda Gallie, global leader in retinoblastoma clinical care, research and innovation, discusses an exciting technology promising to improve care during treatment and beyond. DePICTRB supports collaboration among the child’s entire circle of care, gives parents open access to their child’s record, and empowers clinical research.

Unveiling Shadows: Cognitive and Unconscious Bias in Retinoblastoma Research

The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. Rb survivor and WE C Hope CEO, Abby White, explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.

Multicentre Research Collaborations for Retinoblastoma

Retinoblastoma is a rare cancer, posing major challenges to researchers everywhere. In part 1/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome these challenges and change patient care and outcomes – for the child, survivor, family and professional.

Multicentre Research Collaboration: the Challenge and the Light

Multicentre research is complex.  Challenges can arise in the process of bringing its  many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.

Ethnography: A New Frontier in Retinoblastoma Research

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.

Retinoblastoma Research: Types, Challenges, Opportunities

Retinoblastoma research is vital to understand how this cancer behaves; treatment benefits, side effects, and risks; and impacts throughout life.  Findings help guide medical and supportive care for the child patient, survivor, and family.  Rb Survivor, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges.

About the Authors

Mattan Arazi, M.D. is an ophthalmology resident at The Goldschleger Eye Institute, Sheba Medical Center, in Tel Aviv, Israel. Dr. Arazi is recognized for his outstanding contributions to global ophthalmology and humanitarian efforts.

Dedicated to enhancing global eye care, Dr. Arazi co-founded the Sheba Global Ophthalmology Initiative, demonstrating his commitment to advancing comprehensive eye care solutions worldwide. His efforts have been acknowledged with the David Hunter Cherwek, MD Award for Global Ophthalmology, reflecting his significant impact in the field.

With a strong focus on research, advocacy, and capacity building, Dr. Arazi continues to play a pivotal role in the advancement of eye care on an international scale.

Mattan Arazi

Prof. Ido Didi Fabian, M.D., MPH is a distinguished ophthalmologist specializing in global health and ocular oncology.  He has over 90 published medical articles and contributions to various eye oncology books.

Prof. Fabian has played a pivotal role in the Global Retinoblastoma 2017 study, the most extensive global collaboration involving 4,000 retinoblastoma patients from 154 countries. He is closely associated with the International Centre for Eye Health at the London School of Hygiene & Tropical Medicine in London, UK, and leads the Retinoblastoma Network, championing the Rb-NET MDT Project and co-founding the Asian Retinoblastoma Group.

He organized the first ISOO meeting in Africa, focusing on the unique challenges of ocular oncology across the continent.  He also serves as the Director of Global Ophthalmology at Sheba Medical Center in Tel Aviv, Israel.

Didi Fabian
0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *