Neurofibromatosis (NF) Registry Portal

Description

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

Study Overview

Study Details

Study overview

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.

Neurofibromatosis (NF) Registry Portal Funded by Children's Tumor Foundation

Neurofibromatosis (NF) Registry Portal

Condition
Neurofibromatosis 1
Intervention / Treatment

-

Contacts and Locations

New York

Children's Tumor Fundation, New York, New York, United States, 10017

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Diagnosed with NF1
  • * Diagnosed with NF2
  • * Diagnosed with Schwannomatosis
  • * Failure to complete account registration

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

The Children's Tumor Foundation,

Kate Kelts, B.S.N., PRINCIPAL_INVESTIGATOR, The Children's Tumor Foundation

Study Record Dates

2050-06