Neurofibromatosis (NF) Registry Portal

Part of paid clinical trials in New York, New York.

Sponsor
The Children's Tumor Foundation
Study ID
NCT01885767
Status
Recruiting
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Conditions

  • Neurofibromatosis 1
  • Neurofibromatosis 2
  • Schwannomatosis

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Jun 30, 2012
Status verified
Aug 2023
Primary completion
Jun 30, 2030
Completion
Jun 30, 2050

Study Design

Enrollment
20,000 participants (estimated)

Arms

  • Arm: NF1
    Patients meeting clinical and/or genetic criteria for Neurofibromatosis 1
  • Arm: NF2
    Patients meeting clinical and/or genetic criteria for Neurofibromatosis 2
  • Arm: SchW
    Patients meeting clinical and/or genetic criteria for Schwannomatosis

Primary Outcome Measure

To create a natural history of NF1, NF2, and schwannomatosis [ Time Frame: final report in 2050 with descriptive statistics ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Children's Tumor FundationNew YorkNew York10017
Kate Kelts, B.S.N. (PRINCIPAL_INVESTIGATOR)

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Children's Tumor Fundation· New York, NY

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