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National Lymphangioleiomyomatosis Registry, France

18 Years
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Trial Information

National Lymphangioleiomyomatosis Registry, France

Lymphangioleiomyomatosis is a rare pulmonary disease occuring preferentially in women. Few
data are available regarding the epidemiology of this disease, the frequency of the various
forms with mild to moderate or severe disease, and the rapid or slow progression.

Several sources of information will be used in order to increase completeness. The registry
will also allow to estimate the proportion of patients with lymphangioleiomyomatosis who are
managed by the Reference Center and Competence Centers for rare lung diseases in France.

Data will be collected by a research assistant, and the study will be coordinated by the
Pole IMER - Department of Public health and Epidemiology of HCL (Lyon Hospitals).

This study will provide a better knowledge on the natural course of the disease and the
variability in severity and progression of lymphangioleiomyomatosis, and the applicability
of diagnostic criteria proposed in 2009. This study will provide the first detailed
epidemiological information on Lymphangioleiomyomatosis, will assess the management of this
rare disease within the French National Plan for rare diseases 2005 - 2009, and will provide
valuable medical information prior to the establishment of clinical trials

Inclusion Criteria:

- Patients with sporadic lymphangioleiomyomatosis or associated with Tuberous

- patients diagnosed or hospitalized or seen in consultation since 01/01/2008

Exclusion Criteria:

- None

Type of Study:


Study Design:

Time Perspective: Cross-Sectional

Outcome Measure:

Number of cases

Outcome Description:

Determine incidence and prevalence of lymphangioleiomyomatosis.

Outcome Time Frame:

4 years

Safety Issue:


Principal Investigator

Vincent Cottin, MD

Investigator Role:

Principal Investigator

Investigator Affiliation:

Groupe d'Etudes et de Recherche sur les Maladie Orpheline


France: Comité consultatif sur le traitement de l'information en matière de recherche dans le domaine de la santé

Study ID:




Start Date:

January 2012

Completion Date:

December 2013

Related Keywords:

  • Lymphangioleiomyomatosis
  • Lymphangioleiomyomatosis
  • Lymphangioleiomyomatosis