Tailoring an Online Platform to Promote Evidence-Based Care for Adults With Neurofibromatosis 1 and Low Health Literacy

This decentralized, randomized study seeks to assess the feasibility, acceptability, and preliminary effectiveness of two approaches to assisting Neurofibromatosis 1 (NF1) patients with low health literacy improve their understanding of NF1 symptoms and care recommendations. Participants will be provided with personalized NF1 care letters for themselves and their doctors, along with either NF1 educational videos or a call with an NF1 peer navigator. Adults with NF1 from across the U.S. who have upcoming annual wellness visits scheduled with a primary care provider (PCP) are eligible to enroll in the study. To see if you might be eligible, fill out a prescreening survey here: https://redcap.link/nfpeer

NCT Number	NCT07233408
Lead Sponsor	Massachusetts General Hospital Collaborators: United States Department of Defense
Conditions	Neurofibromatosis 1
Enrollment	50 participants
Start Date	2025-12-28
Primary Completion	2027-05-30 (estimated)
Study Completion	2027-05-30 (estimated)
Updated on ClinicalTrials.gov	2026-07-15