New PET scan could reveal early drug response in rare lung disease

NCT ID NCT05467397

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study tests whether a special PET scan using [11C]acetate can detect early signs that the drug rapamycin is working in people with lymphangioleiomyomatosis (LAM), a rare lung disease. Seven adults with LAM and kidney tumors will get one or two scans over 3–6 months. The goal is to see if the scan can serve as a quick, non-invasive biomarker of treatment response.

What this could mean

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

Active substance

[11C]acetate (a radioactive tracer used in PET scans)

What this could lead to

If successful, this PET scan could provide a new way to quickly see if rapamycin is working in LAM patients, helping doctors adjust treatment sooner.

What could go wrong

This is a very small, early-phase study with only 7 participants, so results may not apply to everyone. The scan is experimental and not yet proven to be reliable.

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.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for TUBEROUS SCLEROSIS COMPLEX are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Conditions

The condition(s) this trial relates to.

lymphangioleiomyomatosis tuberous sclerosis tuberous sclerosis 1

As listed by the trial registrant

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

Contacts and locations

Locations

  • Brigham and Women's Hospital

    Boston, Massachusetts, 02115, United States