Neurofibromatosis (NF) Registry Portal

NCT01885767 | Recruiting

• 1 other identifier: CTF001
• Study Type: observational
• Target: 20,000
• Locations: 1 country
• Sites: 1

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

Keywords

Neurofibromatosis; NF; Neurofibromatosis 1; NF1; Neurofibromatosis 2; NF2; Schwannomatosis

Outcome Measures

Primary Outcomes (1)

• To create a natural history of NF1, NF2, and schwannomatosis

  patients will input medical information and treatment information about their NF and update at least yearly in an ongoing natural history study

  final report in 2050 with descriptive statistics

Study Arms (3)

NF1

Patients meeting clinical and/or genetic criteria for Neurofibromatosis 1

NF2

Patients meeting clinical and/or genetic criteria for Neurofibromatosis 2

SchW

Patients meeting clinical and/or genetic criteria for Schwannomatosis

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients affected with NF1, NF2, or Schwannomatosis

You may qualify if:

• Diagnosed with NF1
• Diagnosed with NF2
• Diagnosed with Schwannomatosis

You may not qualify if:

• Failure to complete account registration

Sponsors & Collaborators

• The Children's Tumor Foundation: lead

Study Sites (1)

Children's Tumor Fundation

New York, New York, 10017, United States

RECRUITING

Related Links

• NF Registry

MeSH Terms

Conditions

Neurofibromatosis 1; Neurofibromatosis 2; Schwannomatosis; Neurofibromatoses

Condition Hierarchy (Ancestors)

Neurofibroma; Nerve Sheath Neoplasms; Neoplasms, Nerve Tissue; Neoplasms by Histologic Type; Neoplasms; Neoplastic Syndromes, Hereditary; Neurocutaneous Syndromes; Nervous System Diseases; Heredodegenerative Disorders, Nervous System; Neurodegenerative Diseases; Peripheral Nervous System Diseases; Neuromuscular Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Neuroma, Acoustic; Neurilemmoma; Neuroendocrine Tumors; Neuroectodermal Tumors; Neoplasms, Germ Cell and Embryonal; Neuroma; Vestibulocochlear Nerve Diseases; Retrocochlear Diseases; Ear Diseases; Otorhinolaryngologic Diseases; Otorhinolaryngologic Neoplasms; Cranial Nerve Neoplasms; Cranial Nerve Diseases

Study Officials

• Kate Kelts, B.S.N.

  The Children's Tumor Foundation

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Kate Kelts, B.S.N.

CONTACT

646-738-8567; kkelts@ctf.org

Annette Bakker, Ph.D.

CONTACT

212-344-7029; abakker@ctf.org

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: OTHER
• Target Duration: 50 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 22, 2013
• First Posted: June 25, 2013
• Study Start: June 1, 2012
• Primary Completion (Estimated): June 1, 2030
• Study Completion (Estimated): June 1, 2050
• Last Updated: August 30, 2023

Record last verified: 2023-08

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)