New study aims to boost lifesaving screenings for rare disease patients
NCT ID NCT06262113
First seen Nov 01, 2025 · Last updated May 16, 2026 · Updated 35 times
Summary
This study compares two educational programs designed to help adults with neurofibromatosis 1 (NF1) and parents of children with NF1 get the recommended health screenings during their annual check-ups. Participants live across the U.S. and do not visit a specialized NF clinic. The goal is to see which program works better at ensuring patients receive evidence-based care from their primary care provider.
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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.
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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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Massachusetts General Hospital
RECRUITINGBoston, Massachusetts, 02114, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
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