Natural History Study of Cutaneous Neurofibromas in People With NF1 (NCT05581511)
Natural History Study of Cutaneous Neurofibromas in People With Neurofibromatosis Type 1
๐ฉบ Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Johns Hopkins University โ Baltimore, Maryland
Age range: 1 Year to 100 Years
๐งช Interventions in This Study
- Evaluation of the natural history of cutaneous neurofibromas (OTHER)
๐ "Do I Qualify?" โ 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria โ
๐ All Participating Trial Locations (1 Sites)
- Johns Hopkins University โ Baltimore, Maryland
๐ Contact the Study Coordinator
Phone: (855) 694-6725
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
๐ฐ Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA ยง 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Neurofibromatosis Type 1
- Natural History Study of Patients With Neurofibromatosis Type I โ Bethesda, Maryland
- Pharmacokinetics, Safety and Efficacy of the Selumetinib Granule Formulation in Children Aged โฅ1 to <7 Years With NF1-related Symptomatic, Inoperable PN โ Akron, Ohio
- Neurofibromatosis Type 1 Tumor Early Detection Study โ Boston, Massachusetts
- Phase I Study to Assess the Effect of Food on the PK and Gastrointestinal Tolerability of Selumetinib in Adolescent Children With Neurofibromatosis Type 1 Related Plexiform Neurofibromas โ Rochester, Minnesota
- Interventions for Reading Disabilities in NF1 โ Nashville, Tennessee
Explore by condition: All Neurofibromatosis Type 1 clinical trials
๐ก How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.