Registry aims to unlock secrets of rare brain tumor in NF1 patients
NCT ID NCT05489783
First seen Jun 29, 2026 · Last updated Jun 30, 2026 · Updated 1 time
Summary
This study creates a registry of medical records, scans, and surveys from adults with neurofibromatosis type 1 (NF1) who also have a glioma brain tumor. Researchers will track diagnosis, treatments, and quality of life over time to better understand the disease. The goal is to improve how doctors diagnose and treat NF1-associated glioma, helping future patients.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this registry could help doctors better understand how to diagnose and treat NF1-associated glioma, potentially improving care for future patients.
What could go wrong
This is an observational registry, not a treatment trial, so it will not directly test new therapies. The findings may take years to influence clinical practice.
Disclaimer
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This is a summary of
the original study
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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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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-••••
Locations
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Memorial Sloan Kettering Basking Ridge (All Protocol Activities)
RECRUITINGBasking Ridge, New Jersey, 07920, United States
Contact Phone: •••-•••-••••
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Memorial Sloan Kettering Bergen (All Protocol Activities)
RECRUITINGMontvale, New Jersey, 07645, United States
Contact Phone: •••-•••-••••
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Memorial Sloan Kettering Cancer Center (All Protocol Activities)
RECRUITINGNew York, New York, 10065, United States
Contact Phone: •••-•••-••••
Contact Phone: •••-•••-••••
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Memorial Sloan Kettering Monmouth (All protocol activities)
RECRUITINGMiddletown, New Jersey, 07748, United States
Contact Phone: •••-•••-••••
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Memorial Sloan Kettering Nassau (All Protocol Activities)
RECRUITINGRockville Centre, New York, 11570, United States
Contact Phone: •••-•••-••••
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Memorial Sloan Kettering Suffolk - Commack (All Protocol Activities)
RECRUITINGCommack, New York, 11725, United States
Contact Phone: •••-•••-••••
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Memorial Sloan Kettering West Harrison (All Protocol Activities)
RECRUITINGHarrison, New York, 10604, United States
Contact Phone: •••-•••-••••