Can a video or a phone call help people with NF1 get better care?

NCT ID NCT07233408

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looks at whether online videos or a call with a peer navigator can help adults with neurofibromatosis 1 (NF1) who have low health literacy better understand their condition and care recommendations. Fifty participants across the U.S. will receive personalized care letters and either educational videos or a coaching call before their annual checkup. The goal is to see if these tools are practical and helpful, not to test a new drug or treatment.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

Active substance

NF1 educational videos and peer navigator calls

What this could lead to

If successful, this could show that simple online tools and peer support help people with NF1 understand their health better and talk to their doctors more effectively.

What could go wrong

This is a small, early feasibility study with only 50 participants, so results may not apply to everyone. It tests understanding, not a medical treatment, so it won't directly change disease outcomes.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

neurofibromatosis neurofibromatosis type 1

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Massachusetts General Hospital

    RECRUITING

    Boston, Massachusetts, 02114, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••