Home › Neurofibromatosis › NCT01885767
Neurofibromatosis (NF) Registry Portal
RecruitingObservational study
Neurofibromatosis (NF) Registry Portal Funded by Children's Tumor Foundation
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: * Diagnosed with NF1 * Diagnosed with NF2 * Diagnosed with Schwannomatosis Exclusion Criteria: * Failure to complete account registration
About the study
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.
Sponsor: The Children's Tumor Foundation · Participants: 20,000 · Started: 2012-06
Contact the study team
- Kate Kelts, B.S.N. · Phone: 646-738-8567
- Annette Bakker, Ph.D. · Phone: 212-344-7029
Official record on ClinicalTrials.gov — NCT01885767
Locations in the U.S.
| New York | Children's Tumor Fundation, New York |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.