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Online Platform for Adults with Neurofibromatosis 1 and Low Health Literacy

This study is looking at ways to help adults with Neurofibromatosis 1 (NF1), a genetic disorder, better understand their condition and care recommendations, especially if they have low health literacy. We are testing two approaches: providing educational videos about NF1 or connecting participants with an NF1 peer navigator (someone who has NF1 and can offer support and guidance). Both groups will also receive personalized letters about NF1 care for themselves and their primary care doctor. We want to see if these tools are helpful and easy to use. You might be able to join if you are an adult in the U.S. with NF1, speak English, have low health literacy, and have an upcoming annual check-up with your primary care doctor. The study aims to understand how feasible and acceptable these tools are.

Study design
This is a randomized study, meaning participants will be assigned by chance to either receive educational videos or speak with a peer navigator. About 50 people will participate.
What's involved
You will complete online surveys before and after your primary care doctor's visit. Some participants may also be asked to do a virtual interview.
Compensation
Not stated in the trial record.
Follow-up
Your participation will be assessed at 2 weeks after your primary care provider visit.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT07233408

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

Recruiting
NAAges 18+InterventionalHealth services
Massachusetts General Hospital
~50 participants
Updated 2026-07-15 on ClinicalTrials.gov
What's tested:NF1 Educational VideosPeer NavigatorLetters about NF1 Care

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Feasibility of Videos and NF1 Peer Navigator Use as an Addition to My NF Guide
Measured over 2 weeks after PCP visit

Conditions

Neurofibromatosis 1

Explore related trials

Neurofibromatosis Type 1

Where it's being run

1 sites across 1 states
Massachusetts1

Study leadership

  • Vanessa Merker, PhD · PRINCIPAL_INVESTIGATOR · Massachusetts General Hospital

Who to contact

Paulina Arias Hernandez, MSW
[email protected]
617-724-5321
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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

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

What this trial measures

  • Feasibility of Videos and NF1 Peer Navigator Use as an Addition to My NF Guide2 weeks after PCP visit

    * Recruitment (% of people that complete prescreening who are eligible) * Willingness to Enroll (% of prescreening-eligible people who enroll) * Retention (% of consented individuals who complete both the baseline survey and follow-up survey) * Intervention Completion (% of people who watch all videos or complete peer navigator meeting, as applicable based on intervention assigned)