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

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Interventional
Study Phase: Not Applicable
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
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:

• 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

Locations
United States
Massachusetts
Massachusetts General Hospital
RECRUITING
Boston
Contact Information
Primary
Paulina Arias Hernandez, MSW
pahernandez@mgb.org
617-724-5321
Backup
Annika Coleman, BS
acoleman0@mgh.harvard.edu
857-282-2167
Time Frame
Start Date: 2025-11-17
Estimated Completion Date: 2026-05-30
Participants
Target number of participants: 50
Treatments
Experimental: NF1 Educational Videos
Experimental: Peer Navigator
Sponsors
Collaborators: United States Department of Defense
Leads: Massachusetts General Hospital

This content was sourced from clinicaltrials.gov