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

First listed
Jun 25, 2013
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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