Neurofibromatosis (NF) Registry Portal

Recruiting now

Conditions studied: Neurofibromatosis 1, Neurofibromatosis 2, Schwannomatosis

In brief

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.

Key facts

Study ID

NCT01885767

Run by

The Children's Tumor Foundation

People needed

20000

Starts

2012-06-01

Expected to finish

2050-06-01

Last updated by the study team

2023-08-30

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Diagnosed with NF1
• Diagnosed with NF2
• Diagnosed with Schwannomatosis

You may not qualify if…

• Failure to complete account registration

Where it is running

• Children's Tumor Fundation — New York, New York, United States (enrolling)

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.