Retinoblastoma registry

Retinoblastoma is a childhood tumor of the retina that affects approximately 44 children in Germany and Austria each year. Overall survival in Europe exceeds 95%, but late effects are a major concern. Retinoblastoma is a very rare disease and published documentation for making evidence-based treatment decisions is scarce. The clinical registry, RB-registry, aims to gather prospective data on retinoblastoma epidemiology and clinical course in Germany and Austria to fill this gap in documentation. Reference evaluation for neuroradiology and histopathology will improve the comparability of the investigations performed at different participating centers.

The different therapies for retinoblastoma include enucleation and conservative treatments utilizing focal therapies as cryotherapy, laser coagulation, radiation or chemotherapy. These therapies vary in success rates and spectrum of late effects. Children with a mutant RB1 germline allele have an increased risk of developing second primary tumors later in life.
The registry offers therapy recommendations for all risk-groups.

• confirmed diagnosis of retinoblastoma by an experienced ophthalmologist or germline RB1 mutation
• below the age of 18 years
• no retinoblastoma-specific treatment prior to inclusion in RB-Registry
• written informed consent of the primary caregivers
• resident of Germany or Austria