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Active Not Recruiting
NCT05581511
Natural History Study of Cutaneous Neurofibromas in People With NF1
Conditions: Neurofibromatosis Type 1, Neurofibromatosis 1, Neurofibromatosis (Nonmalignant), Cutaneous Neurofibroma
Sex: All
Ages: 1 Year – 100 Years
Enrollment: 500
Sponsor: Johns Hopkins University
Location: Johns Hopkins University Baltimore Maryland
Summary
People diagnosed with NF1 may develop cutaneous neurofibromas, also known as cNFs. These benign tumors can cause discomfort and affect a person's quality of life. Researchers at Johns Hopkins are studying how cNF tumors form, grow and change over time. This information may help doctors in the future, provide early interventions and improve quality of life for NF1 patients. Researchers will also explore a new way of monitoring cNF with 3D camera technology. People of all ages with NF1, living in the United States, are invited to participate in this important research study.
Eligibility Criteria
Inclusion criteria:
* Diagnosis of NF1 based on NIH Consensus Conference clinical criteria or confirmed pathogenic NF1 mutation
* Patients ages 1-100 will be eligible to participate
* Ability have 3D whole-body pictures taken which entails standing still for a few seconds
* Ability to provide informed consent or obtain consent from parent or legally authorized representative in the case of patients under 18 years of age who cannot consent for themselves or those with disabilities preventing them from participating in the consent process.
* Participants must be able to travel to Johns Hopkins Hospital for whole-body imaging and physical exam.
Exclusion criteria:
* Concurrent experimental or off label use of therapies for cNF
Source: ClinicalTrials.gov (NCT05581511). StuddyBuddy aggregates publicly available trial information.