RecruitingNot ApplicableNCT07233408

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

Sponsor

Massachusetts General Hospital

Enrollment

50 participants

Start Date

Dec 28, 2025

Study Type

INTERVENTIONAL

Conditions

Neurofibromatosis 1

Summary

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

Eligibility

Min Age: 18 Years

Inclusion Criteria6

Age ≥18 years
Currently lives in the United States
Has a clinical diagnosis of Neurofibromatosis 1
Speaks English
Has low health literacy as ascertained by standardized instruments
Has an in-person, well-person visit (e.g. not a visit to address an acute medical issue) with their primary care provider (PCP) scheduled within the 3 months following their consent

Exclusion Criteria3

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

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Interventions

OTHERNF1 Educational Videos

Participants will receive access to NF1 educational videos that further explain NF1 health surveillance recommendations in advance of the patient's annual wellness visit.

OTHERPeer Navigator

Participants will receive a phone or video call from an NF1 peer navigator. The navigator will explain NF1 health surveillance recommendations and coach individuals on how to discuss these recommendations with their provider.

OTHERLetters about NF1 Care

Participants will receive two letters about NF1 care, one for themselves and one for their primary care clinician, to read in advance of the patient's annual wellness visit.