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 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.

glioma 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: •••-•••-••••

Locations

  • Memorial Sloan Kettering Basking Ridge (All Protocol Activities)

    RECRUITING

    Basking Ridge, New Jersey, 07920, United States

    Contact Phone: •••-•••-••••

  • Memorial Sloan Kettering Bergen (All Protocol Activities)

    RECRUITING

    Montvale, New Jersey, 07645, United States

    Contact Phone: •••-•••-••••

  • Memorial Sloan Kettering Cancer Center (All Protocol Activities)

    RECRUITING

    New York, New York, 10065, United States

    Contact Phone: •••-•••-••••

    Contact Phone: •••-•••-••••

  • Memorial Sloan Kettering Monmouth (All protocol activities)

    RECRUITING

    Middletown, New Jersey, 07748, United States

    Contact Phone: •••-•••-••••

  • Memorial Sloan Kettering Nassau (All Protocol Activities)

    RECRUITING

    Rockville Centre, New York, 11570, United States

    Contact Phone: •••-•••-••••

  • Memorial Sloan Kettering Suffolk - Commack (All Protocol Activities)

    RECRUITING

    Commack, New York, 11725, United States

    Contact Phone: •••-•••-••••

  • Memorial Sloan Kettering West Harrison (All Protocol Activities)

    RECRUITING

    Harrison, New York, 10604, United States

    Contact Phone: •••-•••-••••