Parent/Legal Guardian Perspectives on Youth NF1-OPG Neuroprotection, Neuro-Enhancement and Vision Restoration Treatment Strategies
Offered by: Children’s Hospital of Philadelphia Conducted by: Matthew Hocking, PhD
The specific aims of this project are to describe parent’s perspectives on caring for youth with NF-OPGs, and the factors they consider in choosing neuroprotection, neuro-enhancement and vision restoration treatment strategies using focus groups of parents/LG of youth with NF-OPGs. We are looking to have caregivers complete a treatment decision making questionnaire for this phase of the project.
Who Can Participate?
Caregivers of children ages 1-17 who are alive with a diagnosis of NF1 and an optic pathway glioma. Caregivers must be English-speaking, live with the child at least 50% of the time, and be actively involved in their NF1 care.
Learn More & Get in Touch
For more information about the study, please contact:
When Ben returned home from Camp NF, he had plenty to talk about. He had made friends, tried new things, and even spent a night camping in a tent. His mom, Amy, heard something more in those stories. She heard confidence. “That independence was huge for him, and for me,” she shared. “It was priceless!” ... Read More
If you or someone you love is living with NF, you know the costs can add up: therapies, assistive devices, specialists, and more. An ABLE account is a savings tool built to help with exactly that. The Basics ABLE stands for Achieving a Better Life Experience. It’s a tax-advantaged savings account for people with disabilities.... Read More
Responses