National Lymphangioleiomyomatosis Registry, France
ConditionLymphangioleiomyomatosis
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorVincent COTTIN
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Patients with sporadic lymphangioleiomyomatosis or associated with Tuberous sclerosis.
patients diagnosed or hospitalized or seen in consultation since 01/01/2008
Disqualifiers
None
Trial population
Patients with lymphangioleiomyomatosis
Trial design
Design model
Other
Time perspective
Cross-sectional
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
Number of cases
Determine incidence and prevalence of lymphangioleiomyomatosis.
Time frame
4 yearsSecondary outcomes
1
localisation of cases
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)
Time frame
4 years2
Progression-free survival
Determine the frequency of the various forms with mild to moderate or severe, and rapid or slow evolution.
Time frame
4 years3
Progression-free survival
Determine applicability of diagnostic criteria proposed in 2009
Time frame
4 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Vincent COTTIN
Lead sponsor
Groupe d'Etudes et de Recherche sur les Maladies Orphelines Pulmonaires
Sponsor institution
Hospices Civils de Lyon
Collaborator
Source ClinicalTrials.gov