ClinicalTrials.gov record NCT04665674

Adult Pulmonary Langerhans Cell Histiocytosis: a National Registry-based Prospective Cohort Study

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Jul 27, 2026

Enquête épidémiologique Sur la prévalence et le Pronostic de l'Histiocytose Langerhansienne Pulmonaire de l'Adulte en France

About this page. This page shows the study's official ClinicalTrials.gov record ↗, with added help to make it easier to understand. We explain medical terms, highlight key details in plain language, and suggest questions you may want to ask the study team.

The record is periodically copied from ClinicalTrials.gov and may lag behind changes. AI summaries are checked by software, not a clinician.Read moreShow less

The official record is written by the study sponsor and published on ClinicalTrials.gov. It may not always reflect the latest changes. Before making any decisions, please confirm important information with the study team and your own healthcare team.

Where you see "AI summary", AI was used to create a plain-language explanation and software checked it against the source. It has not been reviewed by a clinician, so it may contain mistakes or leave out important details.

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.The registry record was last updated on Dec 17, 2020, about 5 years ago, so the status shown may be out of date. The study team or the registry can confirm.

Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.

Age18 years old and older

SexAll

LocationFrance

AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This is a prospective registry that follows adults diagnosed with pulmonary Langerhans cell histiocytosis to record long-term outcomes. The study aims to track survival and other health complications over decades.

What it is studying. The study is collecting long-term clinical outcomes in adults with pulmonary Langerhans cell histiocytosis, including overall survival and the cumulative incidence of chronic respiratory failure, pulmonary hypertension, malignant diseases, extra-pulmonary localizations, and annual disease prevalence.

What the researchers hope to learn. To measure overall survival and the long-term occurrence (cumulative incidence) of chronic respiratory failure, pulmonary hypertension, malignant diseases, extra‑pulmonary involvement, and to estimate annual prevalence in adult PLCH patients.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

The long-term outcomes of adult patients with pulmonary Langerhans cell histiocytosis (PLCH), particularly survival, is largely unknown. This is the first prospective study in the field evaluating the long-term outcomes of PLCH patients. This french countrywide registry-based study included a large cohort of PLCH patients followed for a sufficiently long period to address risk factors of long-term outcomes of PLCH patients.

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Other: Standard of care

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

Age >= 18 years
Diagnosis of PLCH was either histologically confirmed on a biopsy of an involved tissue, or based on the combination of the following criteria: 1) an appropriate clinical picture; 2) a typical nodulo-cystic pattern on lung high-resolution computed tomography (HRCT) and 3) exclusion of alternative diagnoses

Exclusion criteria

Study description and what participation involves

The registry record has no detailed description beyond the summary above.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Participants are enrolled in a registry and followed prospectively while receiving standard care for PLCH. The study collects clinical information and tracks outcomes such as overall survival, chronic respiratory failure, pulmonary hypertension, new malignant diseases, and extra‑pulmonary involvement; outcome reporting is given up to 20 years and the registry lists a target duration of 30 years. The registry record does not list any research-only invasive procedures — participation appears to rely on routine clinical care and data collection rather than additional invasive tests.

How the study is structured. A prospective, registry-based observational cohort. Enrolled adults are followed over time (target duration up to 30 years) while receiving standard care; clinical data and outcomes are recorded for analysis.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

The registry lists this study under Histiocytosis; Histiocytosis, Langerhans-Cell; Histiocytosis Pulmonary. Does it apply to my diagnosis?
This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
The listed sites are in France. Is any of them reachable for me, and does the study help with travel?
Which of the eligibility criteria would need to be checked with tests before I could join?

More on Langerhans cell histiocytosis

Clinical trials20 trials listed for Langerhans cell histiocytosisEvery trial the registry lists for Langerhans cell histiocytosis, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in Langerhans cell histiocytosis researchLatest monthly update: September 2026. Includes: Adult routine care. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start: Jan 1, 2004
Primary completion: Dec 31, 2034 (estimated)
Study completion: Dec 31, 2035 (estimated)
Target enrollment: 500 participants (estimated)
Last updated on registry: Dec 17, 2020
Data verified: Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor: Assistance Publique - Hôpitaux de Paris

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Abdellatif TAZI, MD PhD 📞 142499198 ext. 33 ✉ abdellatif.tazi@aphp.fr
matthieu resche-rigon, MD PhD 📞 142499742 ext. 33 ✉ matthieu.resche-rigon@u-paris.fr

Participating sites (1)

French national reference centre for HistiocytosesRecruiting
Paris, 75010 · France
- Abdellatif TAZI, MD PhD · 142499198 ext. 33 · abdellatif.tazi@aphp.fr
- Matthieu RESCHE-RIGON, MD PhD · 142499742 ext. 33 · matthieu.resche-rigon@u-paris.fr

Terms used on this page · explanations by MedicalUpdates.ai

registry: An organised collection of information about people with a particular condition, gathered over time for research. Joining a registry usually means sharing medical information, not receiving a treatment.
cohort: A group of people who share a characteristic, such as a diagnosis, and are studied together. 'Prospective' means they are followed forward from enrolment; 'retrospective' means existing records are reviewed.
histologically confirmed: Removal of a small piece of tissue so it can be examined under a microscope. 'Biopsy-proven' or 'histologically confirmed' means the diagnosis was confirmed by examining tissue under a microscope.
computed tomography: An X-ray scan that builds detailed cross-section images of the body. 'High-resolution' CT (HRCT) is used to look closely at the lungs.
Inclusion Criteria: The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria: The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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