Scientists dig into why skin tumors grow in rare disease

NCT ID NCT00001975

Recruiting now Knowledge-focused Sponsor: National Heart, Lung, and Blood Institute (NHLBI) Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Aug 11, 2026 · Updated 7 times

Summary

This study looks at why people with tuberous sclerosis, a rare genetic condition, develop non-cancerous skin tumors. Researchers will examine up to 400 adults, perform skin exams, and take small tissue samples (biopsies) from tumors. The goal is to identify the cells and genetic changes driving tumor growth, which may help future research.

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 reveal the biological mechanisms behind skin tumor growth in tuberous sclerosis, potentially pointing toward future treatments.
What could go wrong: This is an observational study, not a treatment trial. It is early-stage research focused on understanding, not curing, the disease. Results may not lead directly to therapies.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

hereditary neoplastic syndrome tuberous sclerosis

As listed by the trial registrant

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

TUBEROUS SCLEROSIS

Contacts and locations

Locations

National Institutes of Health Clinical Center
RECRUITING

Bethesda, Maryland, 20892, United States

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