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Neurofibromatosis (NF) Registry Portal

NCT01885767 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 20000

Last updated 2023-08-30

No results posted yet for this study

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.

Conditions

  • Neurofibromatosis 1
  • Neurofibromatosis 2
  • Schwannomatosis

Sponsors & Collaborators

  • The Children's Tumor Foundation

    lead OTHER

Principal Investigators

  • Kate Kelts, B.S.N. · The Children's Tumor Foundation

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2012-06-30
Primary Completion
2030-06-30
Completion
2050-06-30

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT01885767 on ClinicalTrials.gov