A global database of treatment facilities, accessible to parents, survivors and doctors.
Primary doctors, diagnosing ophthalmologists and families often struggle to identify the most appropriate facility to treat children with retinoblastoma. We are compiling a directory of retinoblastoma treatment facilities to help people find the best places for treatment and follow up care, and stimulate a collaborative global community to improve care.
Retinoblastoma requires highly specialized care of affected children and their relatives who may also be at risk of developing cancer. Diagnosing doctors are often unaware of appropriate care, available options or experienced treatment teams. Treatment at facilities with little experience of retinoblastoma or lacking a multidisciplinary team can lead to loss of eyes and lives that could have been saved with existing resources elsewhere.
Many children in developing countries are sent home with no referral, while others are referred to local hospitals that lack specialist knowledge and skills. Some parents are told to travel internationally for care when appropriate treatment is available locally.
In developed countries, children are frequently referred to the nearest children’s hospital or cancer unit. These are often centres of excellence in paediatric care and even paediatric oncology, but many do not see enough children with retinoblastoma each year to build experience or stay up-to-date with optimal management of the cancer.
Many children are referred, or find their own way to well known retinoblastoma treatment centres. However, families frequently incur great costs in the process, when there may be centres of excellence closer to the family home.
We are compiling a global directory of retinoblastoma treatment facilities, documenting available resources, expertise and treatments used. We collect this information from each participating institution via email and telephone survey. This directory identifies hospitals:
capable of performing life-saving eye removal surgery
with experience in vision-salvage therapy
with capacity to treat retinoblastoma that has spread outside the eye.
that can follow up children who have completed treatment.
The One Rb World database will help diagnosing doctors, families and specialists around the world find the most appropriate hospitals and specialist physicians for treatment and follow up of individual children. This knowledge will also help us build a collaborative global community to improve retinoblastoma care for all children.