Update, December 2022:
Newly Named Jeffrey Hanson Optic Pathway Glioma Study Renewed for Five Years
In 2015, CTF funded a visionary study on the natural history of optic pathway gliomas (OPG) led by Michael Fisher, MD, and Robert Avery, DO, from Children’s Hospital of Philadelphia. During the2015-2021 period, the study opened 25 sites, and over 60% of the 250 patients were already
enrolled. CTF recently signed a renewal for $ 1.3 million for an additional five years. The new study will complete enrollment and allow for a more comprehensive collection of OPGs, additional MRI scans, and additional biology samples. So far, 180 children with OPG have been followed for about five years, and significant findings are emerging from the study. The proposal estimates that the planned accrual (250 patients) will be completed in about two years, thanks to the addition of several large European centers with NF1-OPG expertise that have expressed interest in joining the study.
While this is a 5-year renewal proposal, the two principal investigators envision this study will extend for several decades, providing a robust platform to explore many unanswered questions regarding NF1 complications and contribute to eliminating many of these debilitating manifestations of NF1. CTF and the investigators consulted with the Hanson family and decided to rename the study after Jeffrey Hanson, a former CTF ambassador.
Jeffrey was an NF1 patient affected by an optic glioma who recently passed away. We hope the study will help patients like Jeffrey receive better care and, ultimately, a cure for NF.
The CTF and Gilbert Family NF Institute OPG Consortium is Underway
Original Post: February 24, 2016
The Children’s Tumor Foundation and the Gilbert Family Neurofibromatosis Institute proudly announce the Optic Pathway Glioma (OPG) 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.
