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:
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