Tailoring an Online Platform to Promote Evidence-Based Care for Adults With Neurofibromatosis 1 and Low Health Literacy
Recruiting
N/A
Interventional Study
Neurofibromatosis 1
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
At a Glance
- Age
- 18 and older
- Sex
- Any
- Study type
- Interventional
- Purpose
- Health Services Research
- Participants needed
- 50 (estimated)
- Sponsor
- Massachusetts General Hospital · Other
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About This Trial
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 edu…
Trial Locations
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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 issu…
Contacts