Clinical trial · Observational
Neurofibromatosis (NF) Registry Portal
Neurofibromatosis (NF) Registry Portal Funded by Children's Tumor Foundation
NCT01885767CI-TRIAL-00069197recruitingClinicalTrials.gov clinicaltrialsProvenance
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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
Conditions (3)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Neurofibromatosis 1 | — | UNRESOLVED | — |
| Neurofibromatosis 2 | — | UNRESOLVED | — |
| Schwannomatosis | Schwannomatosis | ONTOLOGY_EXACT | 0.98 |
Interventions
Interventions (0)
Data not yet available
No intervention recorded.
Design
Arms and outcomes
Arms (3)
- label
- NF1
- description
- Patients meeting clinical and/or genetic criteria for Neurofibromatosis 1
- label
- NF2
- description
- Patients meeting clinical and/or genetic criteria for Neurofibromatosis 2
- label
- SchW
- description
- Patients meeting clinical and/or genetic criteria for Schwannomatosis
Primary outcomes (1)
- measure
- To create a natural history of NF1, NF2, and schwannomatosis
- timeFrame
- final report in 2050 with descriptive statistics
- description
- patients will input medical information and treatment information about their NF and update at least yearly in an ongoing natural history study
Eligibility
Eligibility (as posted)
- Sex
- All
Show eligibility criteria text
Inclusion Criteria: * Diagnosed with NF1 * Diagnosed with NF2 * Diagnosed with Schwannomatosis Exclusion Criteria: * Failure to complete account registration
References
Publications (0)
Data not yet available
No reference posted for this study.