The overall goal of this effort is to organize the first and largest international multicenter, multi-racial and ethnic consortium of retinoblastoma (RB) survivors to study health outcomes and interrogate genotype-phenotype correlations of disease presentation.  

No organized systematic approach has been undertaken to assess acute toxicities and long-term outcomes of intra-vitreal chemotherapy and intra-arterial chemotherapy or the biologic determinants of aggressive disease presentation, which drives therapeutic decisions, and in turn, health outcomes. As a result pediatric oncology and ophthalmology investigators have gathered to form the Research Into Visual Endpoints and RB Health Outcomes After Treatment (RIVERBOAT) Consortium to:  

• Define acute toxicity and visual outcomes in retinoblastoma survivors and compare patient-centered psychosocial and neurocognitive outcomes in survivors with normative data and sibling controls. 
• Create the first Clinically-Annotated Patient Tissues to Analyze gene INteractions to assess biologic correlates of disease and to facilitate future research: RIVERBOAT- CAPTAIN Biorepository. 

• Using the RIVERBOAT-CAPTAIN biorepository, determine the interplay between specific RB1 mutation type and the role of additional modifier genes in determining tumor phenotypes that drive treatment decisions.  

This project will positively impact survivors of retinoblastoma by: 

• Assessing short and long-term outcomes of contemporary therapy. 
• Establishing a clinically-annotated biorepository for genomic research. 
• Examining molecular pathogenesis of disease presentation. 

For more information about this project please contact: retinoblastoma.research@sickkids.ca