Recruiting

Observational Study

Sponsor:

Memorial Sloan Kettering Cancer Center

Code:

NCT05489783

Conditions

Glioma

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

This study will collect medical records, scan results, and complete surveys to create a registry about people with a neurofibromatosis type 1-associated brain tumor (NF1-associated glioma). A registry is a collection of health information about individuals, and it is usually focused on a specific diagnosis or condition.

This registry study will help the researchers learn more about the diagnosis, treatment, and quality of life of people with NF1-associated glioma. The researchers want to understand what happens as a result of different treatments for NF1-associated glioma and how these treatments and the disease itself affect people's lives over a period of time. Information collected during this study could affect how doctors diagnose, test, and treat NF1-associated glioma, and the study could help future patients with this type of cancer.

Conditions

Glioma

Study ID

NCT05489783

Start date

Jul 29, 2022

Status verified date

Aug, 2026

Completion date

Jul 31, 2027

Anticipated

Primary completion date

Jul 31, 2027

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Inclusion Criteria:

  • Clinical diagnosis that meets NIH criteria for NF1 disease by either 1) documented clinical record establishing NF1 or 2) self-reported with supported documentation upon medical record collection.
  • Willing to have historical and future NF1 related health records sent to registry for review.
  • Radiologic or pathologically confirmed glioma.
  • Individuals ≥18 years of age on the date of informed consent.

Exclusion Criteria:

  • Unwillingness to sign informed consent.
  • No proficiency in English or Spanish as determined by the Investigator.

Study Design

Enrollment

50 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

  • Registry of patients with Neurofibromatosis Type 1 (NF1) associated glioma [ Time Frame: 5 years ]

Central Contacts and Locations

Central contacts

Anna Piotrowski, MD

212-610-0483piotrowa@mskcc.org

Ingo Mellinghoff, MD

646-888-3036

Locations

Memorial Sloan Kettering Basking Ridge (All Protocol Activities)

Recruiting

Basking Ridge, New Jersey, United States, 07920

Contacts

Anna Piotrowski, MD

212-610-0483

Memorial Sloan Kettering Monmouth (All protocol activities)

Recruiting

Middletown, New Jersey, United States, 07748

Contacts

Anna Piotrowski, MD

212-610-0483

Memorial Sloan Kettering Bergen (All Protocol Activities)

Recruiting

Montvale, New Jersey, United States, 07645

Contacts

Anna Piotrowski, MD

212-610-0483

Memorial Sloan Kettering Suffolk - Commack (All Protocol Activities)

Recruiting

Commack, New York, United States, 11725

Contacts

Anna Piotrowski, MD

212-610-0483

Memorial Sloan Kettering West Harrison (All Protocol Activities)

Recruiting

Harrison, New York, United States, 10604

Contacts

Anna Piotrowski, MD

212-610-0483

Memorial Sloan Kettering Cancer Center (All Protocol Activities)

Recruiting

New York, New York, United States, 10065

Contacts

Anna Piotrowski, MD

212-610-0483

Ingo Mellinghoff, MD

646-888-3036

Memorial Sloan Kettering Nassau (All Protocol Activities)

Recruiting

Rockville Centre, New York, United States, 11570

Contacts

Anna Piotrowski, MD

212-610-0483

More Information

Sponsor

Memorial Sloan Kettering Cancer Center

Last update posted

Aug 31, 2026

Last verified

Aug, 2026

Keywords

  • NF1-associated glioma
  • Neurofibromatosis
  • Registry
  • 22-199

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Memorial Sloan Kettering Cancer Center on 2026-08-31.