Recruiting

Observational Study

Sponsor:

The Children's Tumor Foundation

Code:

NCT01885767

Conditions

Neurofibromatosis 1

Neurofibromatosis 2

Schwannomatosis

NF2-related Schwannomatosis

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

The NF Registry is a database of patient-reported symptoms, treatments, and experiences with their neurofibromatosis disease. It is a contact registry to relay clinical trial opportunities to targeted patient subgroups, and to supply de-identified disease data to researchers. It has the potential to become a natural history resource.

Conditions

Neurofibromatosis 1

Neurofibromatosis 2

Schwannomatosis

NF2-related Schwannomatosis

Study ID

NCT01885767

Start date

Jun, 2012

Status verified date

Oct, 2026

Completion date

Jun, 2050

Anticipated

Primary completion date

Jun, 2030

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Inclusion Criteria:

  • Diagnosed with NF1
  • Diagnosed with NF2-related schwannomatosis
  • Diagnosed with Schwannomatosis

Exclusion Criteria:

  • Failure to complete account registration and consent

Study Design

Enrollment

20000 participants

Anticipated

Interventions and Outcome Measures

Arms

NF1

Patients meeting clinical and/or genetic criteria for Neurofibromatosis 1

SchW

Patients meeting clinical and/or genetic criteria for Schwannomatosis

NF2-related schwannomatosis

Individuals diagnosis or suspected to have NF2-related schwannomatosis

Primary outcome measure

  • To create a natural history of NF1, NF2-related schwannomatosis, and schwannomatosis (all other forms). [ Time Frame: final report in 2050 with descriptive statistics ]

Central Contacts and Locations

Central contacts

Kate Kelts, B.S.N.

646-738-8567kkelts@ctf.org

Annette Bakker, Ph.D.

212-344-7029abakker@ctf.org

Locations

Children's Tumor Fundation

Recruiting

New York, New York, United States, 10017

Principal Investigator:

Kate Kelts, B.S.N.

More Information

Sponsor

The Children's Tumor Foundation

Last update posted

Oct 22, 2026

Last verified

Oct, 2026

Keywords

  • Neurofibromatosis
  • NF
  • Neurofibromatosis 1
  • NF1
  • Neurofibromatosis 2
  • NF2
  • Schwannomatosis
  • NF2-related schwannomatosis
  • LZTR1
  • SMARCB1

Trial information was received from ClinicalTrials.gov and was last updated on 2026-10-24. This information was provided to ClinicalTrials.gov by The Children's Tumor Foundation on 2026-10-22. Recruitment status is synced daily from ClinicalTrials.gov and may not reflect the sponsor's current status. Confirm during your call.