Fight Childhood Blindness!
The Fight Childhood Blindness! registry will collect real world treatment data on conditions affecting the vision of infants and children. Analysis will provide real-world evidence on treatment outcomes and the risks and benefits. Our first module will collect data on retinopathy of prematurity.
The Fight Childhood Blindness! Registry
Retinopathy of Prematurity (ROP) is a vision-threatening disease associated with abnormal vascular proliferation in the developing retina of prematurely born babies. Each year, more than 30,000 babies worldwide develop vision impairment due to retinopathy of prematurity, including complete blindness.
This is the first multinational ROP Registry for babies outside of Europe. The Parameters were co-developed with the EU-ROP Registry to allow collaboration and analysis of pooled de-identified data in the future. The aim of this research is to collect real-world data on babies treated for ROP into an Open Access Registry. Analysis of the resulting data will provide real-world evidence on treatment outcomes and the risks and benefits of the different treatments for ROP.
The Fight Childhood Blindness! ROP Registry is part of an already well-established Open Access Registry system, the Fight Retinal Blindness! (FRB!) Project, which is one of the world’s leading “observational” databases, reporting on “real world” patient outcomes. It provides a sophisticated interface which allows data to be entered into a tablet, handheld device of computer with submitted answers automatically and securely transmitted to the database