Online program providing personalized NF1 care letters plus videos or peer navigator support for adults with low health literacy

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

Adults with Neurofibromatosis type 1 and low health literacy are enrolled from across the U.S. and complete online baseline surveys. Participants are randomized to receive either brief, plain-language NF1 educational videos or a scheduled call with a trained NF1 peer navigator, and all receive personalized NF1 care letters for themselves and their clinicians. After attending their scheduled primary care wellness visit participants complete an online follow-up survey, and a small subset will be invited for a virtual qualitative interview. All activities are conducted remotely and no in-person visits to Massachusetts General Hospital are required.

Why it matters

Who can join: the full rules

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

Where it's running

• Massachusetts General Hospital
  Boston, Massachusetts, United States Recruiting

Study contacts

• Principal investigator: Vanessa Merker, PhD — Massachusetts General Hospital
• Study coordinator: Paulina Arias Hernandez, MSW
• Email: pahernandez@mgb.org
• Phone: 617-724-5321

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.