Neurofibromatosis 1 Optic Glioma's - Understanding the mechanisms of Vision Loss for Visual Restoration Strategies



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In this study we are seeking to learn how different eye tests and devices can help understand vision in patients with NF1, including how vision loss might show up on different eye imaging devices that measure the nerves or the blood vessels of the eye. The study aims to understand the mechanisms of vision loss caused by neurofibromatosis type 1 (NF1)-associated optic pathway gliomas, or NF1-OPGs. Subjects eight years and older with NF1 are eligible to enroll.

Subjects may not benefit directly from participating in this study, but the knowledge gained will help doctors understand the potential benefit of using these tests and other procedures to improve their ability to identify the best tests to monitor visual function, and ultimately identify treatments to improve vision, in children and adults with NF1.

Who Do I Contact?

If you are interested in participating in the study or want to learn more please contact our study team at VRIstudy [at] or 215-410-2768.

Eligibility & Criteria

IRB #:
Official Title:
Identifying Biomarkers for Visual Restoration Strategies in NF1-OPGs
Study Phase:
Not Applicable
Eligible Age Range:
8 - 99 Years
Study Categories:

Visit Criteria

The study will take place at two locations: the Children’s Hospital of Philadelphia (Philadelphia, PA) and the Byers Eye Institute at Stanford University School of Medicine (Palo Alto, CA). Eligible subjects will spend approximately two days undergoing various non-invasive eye tests, all of which have been proven to be safe for children and adults. One year later, participants will be asked to return and have many of these eye tests repeated, to assess for change over time.

Those interested in participating should contact the location closest to their home via email. The Children’s Hospital of Philadelphia can be reached at [email protected]. The Stanford University School of Medicine can be reached at [email protected]. Once eligibility is confirmed, a study visit will be scheduled. Travel expenses for the subject and one legal guardian will be covered by the study, and eligible subjects that participate in the study will receive a stipend for their initial two-day visit. They will again receive a stipend for participating in the second two-day visit occurring one year later.