University of Minnesota's Patient Perspective Study for Adults with NF1

Author: University of Minnesota

Published On: 02/15/2024

Researchers at the University of Minnesota are conducting qualitative study to better understand experiences of families in terms of accessing or receiving treatments for behavioral health concerns. Their goal is to better understand whether young people with NF1 feel that their needs are being met with current treatments and supports, and understand barriers and facilitators to care.

The team has conducted several focus groups with caregivers of children and young adults with NF1 and other RASopathies, and are now working on a phase of the study in which we are connecting with young adult advocates to hear their perspectives. Participants will complete a 1 hour virtual interview in which they will be asked questions about their ortheir behavioral health history, as well as their perspectives regarding treatments for any concerns.

To see if you qualify, visit this link or email wellstudy@umn.edu.