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The CTF and Gilbert Family NF Institute OPG Consortium is Underway

The Children’s Tumor Foundation and the Gilbert Family Neurofibromatosis Institute proudly announce the Optic Pathway Glioma (OBG) Consortium, a five-year collaboration involving 25 NF clinics in a study of OPG in children with neurofibromatosis type 1 (NF1).

“We asked the researchers and the clinicians to collaborate while we also collaborate amongst funding agents and other organizations that will make a difference for neurofibromatosis patients,” said Annette Bakker, Children’s Tumor Foundation President and Chief Scientific Officer about the partnership.

The goal of the OPG study is to provide NF clinicians with clear criteria that will help them decide when a patient should be treated, and when treatment should be avoided because of harsh side effects.


This multicenter collaboration, chaired by two top principal investigators in the field, Michael Fisher, MD, and Robert Avery, DO, MSCE of the Children’s Hospital of Philadelphia, is an observational study. This means that there is no new treatment being tested; each enrolled patient’s doctor will decide whether to recommend conventional treatment. Patients will have their vision checked periodically during the study and, if treated, after treatment for a period of three years. Some centers will begin enrolling this spring, with the others to follow.