Adult Pulmonary Langerhans Cell Histiocytosis: a National Registry-based Prospective Cohort Study
Enquête épidémiologique Sur la prévalence et le Pronostic de l'Histiocytose Langerhansienne Pulmonaire de l'Adulte en France
1 other identifier
observational
500
1 country
1
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jan 2004
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
January 1, 2004
CompletedFirst Submitted
Initial submission to the registry
November 30, 2020
CompletedFirst Posted
Study publicly available on registry
December 11, 2020
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 31, 2034
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 31, 2035
December 17, 2020
November 1, 2020
31 years
November 30, 2020
December 15, 2020
Conditions
Outcome Measures
Primary Outcomes (1)
Overall survival
Overall survival defined as the time from inclusion to death from any cause.
20 years
Secondary Outcomes (5)
CRF
20 years
PH
20 years
Malignant diseases
20 years
Extra-pulmonary involvement in isolated PLCH
20 years
Annual prevalence
20 years
Study Arms (1)
Pulmonary Langerhans cell histiocytosis (PLCH)
All patients with newly diagnosed PLCH at adulthood (i.e. 18 years of age or older) referred to the French national reference centre for Histiocytoses
Interventions
Standard of car of pulmonary Langerhans cell histiocytosis (PLCH)
Eligibility Criteria
All patients with newly diagnosed PLCH at adulthood (i.e. 18 years of age or older) referred to the French national reference centre for Histiocytoses
You may qualify if:
- Age \>= 18 years
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
French national reference centre for Histiocytoses
Paris, 75010, France
Related Publications (1)
Benattia A, Bugnet E, Walter-Petrich A, de Margerie-Mellon C, Meignin V, Seguin-Givelet A, Lorillon G, Chevret S, Tazi A. Long-term outcomes of adult pulmonary Langerhans cell histiocytosis: a prospective cohort. Eur Respir J. 2022 May 26;59(5):2101017. doi: 10.1183/13993003.01017-2021. Print 2022 May.
PMID: 34675043DERIVED
MeSH Terms
Conditions
Interventions
Condition Hierarchy (Ancestors)
Intervention Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 30 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
November 30, 2020
First Posted
December 11, 2020
Study Start
January 1, 2004
Primary Completion (Estimated)
December 31, 2034
Study Completion (Estimated)
December 31, 2035
Last Updated
December 17, 2020
Record last verified: 2020-11