NCT05581511Active, not recruiting
Natural History Study of Cutaneous Neurofibromas in People With NF1
Natural History Study of Cutaneous Neurofibromas in People With Neurofibromatosis Type 1
Source: ClinicalTrials.gov · Last updated 23 Oct 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Active, not recruiting
- Study type
- Observational
- Enrollment
- 500 (estimated)
- First submitted
- 12 Oct 2022
- Start date
- 28 Jun 2021
- Primary completion date
- 31 Dec 2028
- Lead sponsor
- Johns Hopkins University
- Diseases
- Childhood cancers
- NCT number
- NCT05581511
What you commit to
- Study type: Observational
- Planned participants: 500
- From 28 Jun 2021 to the primary completion date, 31 Dec 2028
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study design.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Prior treatment
- Concurrent experimental or off label use of therapies for cNF
Who the study is looking for
- 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.
Age in the registry: 1 year to 100 years · Sex: All
Sites (1)
Sites in registry order. Save your city in your profile to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Johns Hopkins University Coordinator of this site? Confirm its status | Baltimore | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.