Retinoblastoma

The Global Retinoblastoma Program is dedicated to improving survival and vision outcomes for children with retinoblastoma worldwide by building collaborations focused on education, research and capacity building. 

Program Initiatives 

The program works closely with the Global Retinoblastoma Advisory Group, a multidisciplinary group that includes individuals from a variety of specialities ranging from ophthalmalogists to pediatric oncologists. Our collective goal is to aid countries, health care providers, caregivers and patients by creating and providing education and research initiatives to help increase favorable outcomes for children with retinoblastoma. We have developed Project Focused Working Groups, consisting of members from the Advisory Group, to oversee certain initiatives. 

Below is a list of some past, present and future initiatives: 

• Global Assessment - The St. Jude Pediatric Oncology Facility Integrated Local Evaluation Retinoblastoma Tool has been developed by the Global RB team in coordination with the PrOFILE team, to assess the capacity and quality of pediatric hematology and/or oncology facilities to diagnose and treat patients with retinoblastoma. This unique survey aims to define the care delivery landscape at both the regional and country level, guide conversations on strengths and opportunities, and establish priorities for improvement with the goal of optimizing retinoblastoma care. 
• Tumor Board Toolkit - The Retinoblastoma Tumor Board Working Group created this toolkit to share resources and knowledge about hosting a retinoblastoma-specific tumor board. The goal for this toolkit is to expand the number of tumor boards focused on retinoblastoma globally. Tumor boards are an incredibly useful tool to improve outcomes for children with retinoblastoma and provide a platform to increase the understanding of retinoblastoma globally. The toolkit includes templates for presentation guides, a facilitator checklist, and additional information needed to begin a retinoblastoma tumor board. Institutions, countries or regions may use this toolkit to enhance current tumor boards or create a new one as well as find current groups that are already established. 
• Early Diagnosis Toolkit - Eighty percent of retinoblastoma cases are found in low- and middle-income countries. On average, children within these countries are diagnosed at an older age with more advanced disease progression compared to high-income countries. Early detection is necessary for the health and survival of children diagnosed with this disease. The Retinoblastoma Early Diagnosis Working Group, consisting of partners from varying specialities and institutions/regions, seeks to create an adaptable global toolkit that will provide a guide and resources for starting an early diagnosis campaign within a region or country. Our goal is to educate, inspire and help people establish a successful campaign that will decrease the percentage of children diagnosed late; therefore, increasing the country's retinoblastoma survival rate. 
• Global Retinoblastoma Academy - The St. Jude Global Retinoblastoma Classroom seeks to provide participants with the knowledge and skills needed to improve the survival and vision outcomes of children with retinoblastoma. The classrom is based on a systematic approach to understanding and closing the gaps in the treatment and management of retinoblastoma. It was developed for the participation and engagement of multidisciplinary teams. This 13-week online curriculum offers seminars, discussion groups and training videos that provide physicians and nurses with current clinical knowledge for the effective management and treatment of retinoblastoma. In addition, the course examines the impact of resources limitations on outcomes and strategies that are effective in overcoming them. 
• Regional Collaborations - The team regularly collaborates with the regional programs to strengthen connections, help build capacity within the regions and conduct learning opportunities. Below are some examples of recent conferences we've attended or facilitated. 
  • POEM - On March 5, 2023, our team met with oncologists and ophthalmologists from the Pediatric Oncology East and Mediterranean (POEM) group in Muscat, Oman, to strengthen collaborations and outline a strategic vision for the treatment of children with retinoblastoma within the region. Together, we discussed various challenges, potential solutions and institutional-based initiatives. Six health care facilities presented the state of retinoblastoma care at their institution. 
  • ISOO Africa - St. Jude Global conducted a session at the International Society for Ocular Oncology meeting in Kenya in August 2023, that aimed to identify strengths and weaknesses in diagnosing and treating retinoblastoma in the region, envision an ideal collaborative retinoblastoma treatment center in Sub-Saharan Africa, and develop next steps to achieve earlier diagnosis and improved outcomes for patients within the region. This workshop gathered a multifaceted analysis of the strengths and limitations for treatment of children with retinoblastoma.     

Contact: 

To learn more about the Global Retinoblastoma Program, email globalretinoblastoma@stjude.org.