Clinical trial · Observational
National Lymphangioleiomyomatosis Registry, France
NCT01484236CI-TRIAL-00087149RE-LAM-CErecruitingClinicalTrials.gov clinicaltrialsProvenance
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 12, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260912-000001
Summary
Brief summary (as posted)
RE-LAM-CE is a registry of lymphangioleiomyomatosis cases in France. its aim is to determine the incidence and prevalence of lymphangioleiomyomatosis in France, including demographic information and information concerning the timing and modalities of diagnosis. Based on the registry, we will set up a prospective cohort of patients. The database will include detailed medical information, particularly regarding progression of the respiratory function.
Conditions
Conditions (1)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Lymphangioleiomyomatosis | Lymphangioleiomyomatosis | ONTOLOGY_EXACT | 0.98 |
Interventions
Interventions (0)
Data not yet available
No intervention recorded.
Design
Arms and outcomes
Arms (0)
[]Primary outcomes (1)
- measure
- Number of cases
- timeFrame
- 4 years
- description
- Determine incidence and prevalence of lymphangioleiomyomatosis.
Secondary outcomes (3)
- measure
- localisation of cases
- timeFrame
- 4 years
- description
- Estimate the proportion of patients with lymphangioleiomyomatosis who are managed by the Reference Center and Centers of excellence for rare lung diseases in France (coverage rate of centers)
- measure
- Progression-free survival
- timeFrame
- 4 years
- description
- Determine the frequency of the various forms with mild to moderate or severe, and rapid or slow evolution.
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
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
References
Publications (0)
Data not yet available
No reference posted for this study.