Recruiting

NF1 Education

Sponsor:

Massachusetts General Hospital

Code:

NCT07233408

Conditions

Neurofibromatosis 1

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Interventions

NF1 Educational Videos

Peer Navigator

Letters about NF1 Care

Study Details

Brief 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

Conditions

Neurofibromatosis 1

Study ID

NCT07233408

Start date

Dec 28, 2025

Status verified date

Dec, 2025

Completion date

May 30, 2027

Anticipated

Primary completion date

May 30, 2027

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

50 participants

Anticipated

Allocation

Randomized

Intervention Model

Parallel Assignment

Primary purpose

Health Services Research

Interventions and Outcome Measures

Arms

experimental: NF1 Educational Videos

experimental: Peer Navigator

Interventions

NF1 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.

Peer 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.

Letters 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.

Primary outcome measure

  • Feasibility of Videos and NF1 Peer Navigator Use as an Addition to My NF Guide [ Time Frame: 2 weeks after PCP visit ]

Central Contacts and Locations

Central contacts

Paulina Arias Hernandez, MSW

617-724-5321pahernandez@mgb.org

Annika Coleman, BS

857-282-2167acoleman0@mgh.harvard.edu

Locations

Massachusetts General Hospital

Recruiting

Boston, Massachusetts, United States, 02114

Contacts

Paulina Arias Hernandez, MSW

617-724-5321pahernandez@mgb.org

Annika Coleman, BS

857-282-2167acoleman0@mgh.harvard.edu

More Information

Sponsor

Massachusetts General Hospital

Last update posted

Jul 15, 2026

Last verified

Dec, 2025

Keywords

  • Neurofibromatosis
  • NF1
  • Guideline
  • Primary Care
  • Annual Care
  • Low Health Literacy
  • Healthcare
  • PCP

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Massachusetts General Hospital on 2026-07-15.