France maps a rare lung disease: registry aims to count every LAM case
NCT ID NCT01484236
First seen Sep 11, 2026 · Last updated Sep 11, 2026
Summary
Researchers in France are building a national registry of people with lymphangioleiomyomatosis (LAM), a rare lung disease that mostly affects women. The registry aims to estimate how many people in France have LAM, gather demographic details, and record when and how the disease is diagnosed. It also follows patients over time to track changes in lung function and other health outcomes. The study includes people with sporadic LAM or LAM linked to tuberous sclerosis who were diagnosed or seen at a participating center since 2008.
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 the registry succeeds, it could give doctors a clearer picture of how many people in France have LAM, how the disease is diagnosed, and how lung function changes over time. That information may help guide future research and care.
- What could go wrong
- This is an observational registry, not a treatment trial, so it cannot show whether any therapy works. The findings will reflect only patients seen at French referral centers, so they may not represent everyone with LAM.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 200 people
The number the study aims to enrol. It can still change while the study runs.
- Start date
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Jan 2012
- Expected to finish
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Dec 2028
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Patients with lymphangioleiomyomatosis
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Patients with sporadic lymphangioleiomyomatosis or associated with Tuberous sclerosis. * patients diagnosed or hospitalized or seen in consultation since 01/01/2008 Exclusion Criteria: * None
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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.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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Hôpital Louis Pradel
RECRUITINGLyon, 69677, France
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