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

Status: Recruiting
Location: See location...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• Diagnosed with NF1

• Diagnosed with Schwannomatosis

Locations
United States
New York
Children's Tumor Fundation
RECRUITING
New York
Contact Information
Primary
Kate Kelts, B.S.N.
kkelts@ctf.org
646-738-8567
Backup
Annette Bakker, Ph.D.
abakker@ctf.org
212-344-7029
Time Frame
Start Date: 2012-06
Estimated Completion Date: 2050-06
Participants
Target number of participants: 20000
Treatments
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
Authors
Pamela B Knight
Sponsors
Leads: The Children's Tumor Foundation

This content was sourced from clinicaltrials.gov

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