National registry study on adult pulmonary Langerhans cell histiocytosis
Official title: Enquête épidémiologique Sur la prévalence et le Pronostic de l'Histiocytose Langerhansienne Pulmonaire de l'Adulte en France
Run by Assistance Publique - Hôpitaux de Paris · NCT04665674 · Data updated 2026-11-12
This study looks at the long-term health and survival of adults with pulmonary Langerhans cell histiocytosis to see what factors might affect their outcomes.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 500 (estimated) |
| Sponsor | Assistance Publique - Hôpitaux de Paris Academic / other |
| Locations | 1 site (Paris) |
| Status | Recruiting |
| Started | January 1, 2004 |
| Main results expected | December 31, 2034 |
| Study ends | December 31, 2035 |
| Registry record updated | December 17, 2020 |
| Trial ID | NCT04665674 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are adults aged 18 years and older with a confirmed diagnosis of pulmonary Langerhans cell histiocytosis.
✕Probably not a fit
Patients with alternative diagnoses or those under 18 years of age may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study aims to evaluate the long-term outcomes, particularly survival, of adult patients diagnosed with pulmonary Langerhans cell histiocytosis (PLCH). It is the first prospective cohort study in this field, utilizing a nationwide registry in France to gather data from a large cohort of PLCH patients. Participants will be followed over an extended period to identify risk factors that influence long-term outcomes. The study will rely on standard care interventions while focusing on observational data collection.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into the long-term prognosis and management of patients with pulmonary Langerhans cell histiocytosis.
How similar studies have gone: This study is novel as it is the first prospective evaluation of long-term outcomes in PLCH patients, and similar studies in other histiocytosis conditions have shown promising results.
Who can join: the full rules
Show full inclusion / exclusion criteria
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: \-
Where it's running
-
French national reference centre for Histiocytoses
Paris, France Recruiting
Study contacts
- Study coordinator: Abdellatif TAZI, MD PhD
- Email: abdellatif.tazi@aphp.fr
- Phone: 142499198
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Identifying biomarkers in adult Langerhans cell histiocytosis
This study is trying to see if certain gene changes in blood samples can help doctors better understand and manage Langerhans cell histiocytosis in adults.
-
Follow-up on health outcomes in patients with histiocytic disorders
This study looks at the long-term health effects of histiocytic disorders on around 6000 patients to see how these conditions impact their overall well-being and quality of life.
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Evaluating BDTX-4933 for patients with specific cancer mutations
This study is testing a new drug called BDTX-4933 to see if it can help adults with advanced cancers that have certain gene mutations feel better and improve their treatment options.
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Low-dose cytarabine combined with thalidomide for adults with newly diagnosed LCH
This trial tests whether combining low-dose cytarabine with thalidomide is safe and effective for adults newly diagnosed with multisystem or multifocal Langerhans cell histiocytosis.
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Targeted treatment for Langerhans Cell Histiocytosis using trametinib
This study is testing if trametinib, a new targeted therapy, can help children with Langerhans Cell Histiocytosis feel better and avoid the harsh side effects of traditional chemotherapy.
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Evaluating FCN-159 for treating pediatric patients with recurrent LCH
This study is testing a new medication called FCN-159 to see if it can help children aged 2 to 16 with recurring Langerhans cell histiocytosis feel better.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.