500 NF1 patients join study to track skin tumors over 5 years

NCT ID NCT05581511

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 500 people with neurofibromatosis type 1 (NF1) to see how their skin tumors (called cutaneous neurofibromas) grow and change over time. Researchers use 3D whole-body photography to track tumor number and size each year. The goal is to better understand these tumors and improve future care for people with NF1.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this could help doctors better predict how skin tumors grow in NF1 and guide future treatments.

What could go wrong

This is an observational study, not testing a treatment. It may not lead to direct benefits for participants.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

neurofibroma neurofibromatosis neurofibromatosis type 1

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • Johns Hopkins University

    Baltimore, Maryland, 21287, United States