Suspended

Assessment of Rapamycin Response in LAM Patients Using [11C]Acetate PET Imaging

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What is being tested

[11C]acetate

Drug
Who is being recruted

Congenital Abnormalities+23

+ Hamartoma

+ Hemic and Lymphatic Diseases

Over 18 Years
See all eligibility criteria
How is the trial designed

Diagnostic Study

Phase 1 & 2
Interventional
Study Start: August 2021
See protocol details

Summary

Principal SponsorBrigham and Women's Hospital
Last updated: January 28, 2026
Sourced from a government-validated database.Claim as a partner

Study start date: August 30, 2021

Actual date on which the first participant was enrolled.

Lymphangioleiomyomatosis (LAM) is a rare disease affecting women, causing a growth of abnormal cells in the lungs and other organs. These cells have mutations in the TSC1 or TSC2 genes, leading to overactivation of a protein called mTORC1, which stimulates cell growth and metabolism. This results in lung damage, collapsed lungs, and fluid buildup around the lungs. LAM can also cause non-cancerous tumors in the kidneys and lymph vessels. Rapamycin, a drug approved by the FDA, is used to treat LAM and related kidney tumors. However, when treatment stops, the disease may start progressing again. This study aims to find a sensitive and specific way to measure how well the treatment is working and if the disease is progressing, using a type of imaging called [11C]Acetate positron emission tomography (PET) imaging. During the study, participants with LAM will undergo [11C]Acetate PET imaging. This non-invasive scan measures the metabolic activity of LAM lesions. The main goal is to assess how well the [11C]Acetate is taken up by the kidney tumors, using a measurement called Standardized Uptake Value (SUV). This will help determine if [11C]Acetate PET imaging can be used as an effective tool to monitor the response to Rapamycin treatment in LAM patients.

Official TitleFeasibility Study of [11C]Acetate Positron Emission Tomography (PET) as an Indicator of Early Response to Rapamycin in Lymphangioleiomyomatosis (LAM) Patients
NCT05467397
Principal SponsorBrigham and Women's Hospital
Last updated: January 28, 2026
Sourced from a government-validated database.Claim as a partner

Protocol

This section provides details of the study plan, including how the study is designed and what the study is measuring.
Design Details

7 patients to be enrolled

Total number of participants that the clinical trial aims to recruit.

Diagnostic Study

Diagnostic studies focus on improving how we detect or confirm a disease. They test new tools or techniques that could provide faster or more accurate diagnoses.



Eligibility

Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.
Conditions
Criteria

Female

Biological sex of participants that are eligible to enroll.

Over 18 Years

Range of ages for which participants are eligible to join.

Healthy volunteers not allowed

If individuals who are healthy and do not have the condition being studied can participate.

Conditions

Pathology

Congenital AbnormalitiesHamartomaHemic and Lymphatic DiseasesImmune System DiseasesImmunoproliferative DisordersLymphangiomyomaLymphatic DiseasesLymphoproliferative DisordersCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesNeoplasmsNeoplasms by Histologic TypeNeoplasms, Multiple PrimaryNeoplastic Syndromes, HereditaryNervous System MalformationsNervous System DiseasesTuberous SclerosisNeoplasm, Lymphatic TissueLymphangioleiomyomatosisNeoplasms, Connective and Soft TissueNeurodegenerative DiseasesHeredodegenerative Disorders, Nervous SystemNeurocutaneous SyndromesGenetic Diseases, InbornMalformations of Cortical DevelopmentPerivascular Epithelioid Cell NeoplasmsMalformations of Cortical Development, Group I

Criteria

Inclusion Criteria: * diagnosis of LAM (or TSC-LAM) * age 18 or over * at least one renal angiomyolipoma (at least 1 cm in each diameter) confirmed by CT or MRI * no prior treatment with rapamycin/rapalogs OR candidate for initiating treatment with rapamycin/rapalogs OR under treatment with rapamycin/rapalogs for minimum 3 months and maximum of 1 year Exclusion Criteria: * under treatment with rapamycin or rapalogs for \< 3 months or \> 1 year * participated in research studies involving radiation exposure (\> 50 mSv/year) in the past 12 months

Study Plan

Find out more about all the medication administered in this study, their detailed description and what they involve.
Treatment Groups

One single intervention group is designated in this study

This study does not include a placebo group 

Treatment Groups

Group I

Experimental
Patients will undergo a single \[11c\]acetate PET scan OR Patients will undergo an \[11c\]acetate PET scan, initiate treatment with rapamycin or rapalogs and receive a second \[11c\]acetate PET scan 3 or 4 months after starting the treatment.

Study Centers

These are the hospitals, clinics, or research facilities where the trial is being conducted. You can find the location closest to you and its status.

This study has 1 location

Suspended

Brigham and Women's Hospital

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SuspendedOne Study Center