Neurofibromatosis (NF) Registry Portal
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorThe Children's Tumor Foundation
About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
Diagnosed with NF1
Diagnosed with NF2
Diagnosed with Schwannomatosis
Disqualifiers
Failure to complete account registration
Trial population
Patients affected with NF1, NF2, or Schwannomatosis
Trial design
Design model
Case-only
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
20,000 Participants
are grouped into 3 trial groupsGroup A: NF1
Group B: NF2
Group C: SchW
Trial outcomes
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
Time frame
final report in 2050 with descriptive statisticsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov