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
Age ≥18 years
Currently lives in the United States
Has a clinical diagnosis of Neurofibromatosis 1
Speaks English
Unwilling or unable to give informed consent
Is too cognitively impaired to participate in the opinion of the study investigator (e.g. any cognitive or developmental delay that prevents completion of study questionnaires)
Was enrolled in or is the parent or guardian of a participant enrolled in randomized clinical trial NCT06262113
Massachusetts General Hospital
Lead sponsor
United States Department of Defense
Collaborator