New study aims to boost lifesaving screenings for rare disease patients

NCT ID NCT06262113

Recruiting now Knowledge-focused Sponsor: Massachusetts General Hospital Source: ClinicalTrials.gov ↗

First seen Nov 01, 2025 · Last updated May 22, 2026 · Updated 37 times

Summary

This study tests two different educational programs to see which one helps adults with Neurofibromatosis 1 (NF1) and parents of children with NF1 get the recommended health screenings during their regular check-ups. Participants live in the U.S., do not visit a specialized NF clinic, and have an annual wellness visit scheduled. The goal is to improve care for underserved patients by making sure they receive evidence-based screenings.

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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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Contacts and locations

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Study contacts

Contact

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

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

Locations

Massachusetts General Hospital
RECRUITING

Boston, Massachusetts, 02114, United States

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

Conditions

Explore the condition pages connected to this study.

NEUROFIBROMATOSIS 1