Childhood glaucoma is an uncommon and chronic disorder that can cause permanent vision loss and blindness if left untreated. However, with an accurate and early diagnosis, along with effective treatment, children with pediatric glaucoma can achieve normal or near normal vision. Until recent years, there has been little collaboration between physicians worldwide to determine the best course of action for the care of pediatric glaucoma. The Childhood Glaucoma Research Network was created to change this.

 

The CGRN was organized in 2011 to facilitate collaboration between thought leaders from leading eye care centers around the world. The CGRN aims to utilize each member’s unique expertise and understanding of pediatric eye disease and glaucoma to promote progress in research and improve care of childhood glaucoma.

 

The initial work in creating the CGRN was led by the voluntary efforts of a number of pediatric glaucoma specialists in the United States and United Kingdom. Dr. Alana Grajewski, glaucoma and pediatric glaucoma specialist, (Retired, Clinical Professor of Ophthalmology, University of Miami's Bascom Palmer Eye Institute and Founder, Samuel & Ethel Balkan International Pediatric Glaucoma Center) organized the group and established financial support from the GL Foundation for Children with Glaucoma, the University of Minnesota Ophthalmology and Visual Neurosciences, and the Minnesota Lions Vision Foundation.

 

Prior to the creation of the CGRN, physicians worldwide were using different language to describe what they were experiencing with patients with pediatric glaucoma. Within 12 months, the CGRN successfully proposed the first International Consensus Classification of childhood glaucoma to serve as the foundation for future research. The classification is now recognized worldwide as the classification for childhood glaucoma, reaching consensus agreement at the Ninth World Glaucoma Association Consensus and has been adopted by the American Board of Ophthalmology.

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In 2013, members of the CGRN united to contribute to the publication of the World Glaucoma Association's Consensus Series - 9 on Childhood Glaucoma. In 2014, the Childhood Glaucoma Research Network became a member the World Glaucoma Association. In 2018, members once again collaborated for the publication of the Surgical Management of Childhood Glaucoma.

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As an uncommon disease, there is a significant research challenge with pediatric glaucoma because individual eye centers across the world do not have enough patients to accomplish critical studies. In 2016, the CGRN was able to complete the first ever worldwide survey of pediatric glaucoma to advance our understanding of all types of glaucoma called the International Study of Childhood  Glaucoma (ISOCG). Following the completion of ISOCG, the Network joined forces with Alex V. Levin, MD, MHSc, FAAP, FAAO, FRCSC to establish The Robison Harley Childhood Glaucoma Research Network (CGRN) International Pediatric Glaucoma Registry as a centralized database hosted at the University of Rochester to facilitate collaborative research worldwide. There is no charge to join, participate, or develop research from the Registry. The data is available to members for their use for research, under their own authorship. The data that is contributed is instrumental in driving research, refining treatment approaches, and ultimately improving the lives of children affected by glaucoma.