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Tailoring an Online Platform to Promote Evidence-Based Care for Adults With Neurofibromatosis 1 and Low Health Literacy
Who can join
Ages 18 and older · All sexes
Full eligibility criteria
Inclusion Criteria: * 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 Criteria: * 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
About the study
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
What is being tested
- NF1 Educational Videos (other)
- Peer Navigator (other)
- Letters about NF1 Care (other)
Sponsor: Massachusetts General Hospital · Participants: 50 · Started: Dec 28, 2025
Contact the study team
- Paulina Arias Hernandez, MSW · Phone: 617-724-5321
- Annika Coleman, BS · Phone: 857-282-2167
Official record on ClinicalTrials.gov — NCT07233408
Locations in the U.S.
| Massachusetts | Massachusetts General Hospital, Boston |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.