Scientists investigate rare overgrowth disorder proteus syndrome
NCT ID NCT00001403
First seen Jun 25, 2026 · Last updated Aug 14, 2026 · Updated 13 times
Summary
This study aims to understand the genetic and biological causes of Proteus syndrome, a rare condition causing abnormal growth of bones, skin, and other tissues. Researchers will follow up to 1,500 participants over time, using medical exams, imaging, and blood tests to track how the disease changes. The goal is to better diagnose and characterize the disorder, not to test a new treatment.
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 study could improve diagnosis and understanding of Proteus syndrome, potentially guiding future treatments.
- What could go wrong
- This is an observational study, not a treatment trial. It may not directly lead to new therapies, and results may take years to translate into clinical practice.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for PIK3CA RELATED OVERGROWTH SPECTRUM are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
-
National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.