Registry for lymphangioleiomyomatosis cases in France

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The RE-LAM-CE registry aims to gather comprehensive data on lymphangioleiomyomatosis cases in France, focusing on the incidence, prevalence, and demographic details of the disease. This observational study will create a prospective cohort of patients, collecting detailed medical information, particularly regarding the progression of respiratory function. By utilizing multiple sources of information, the registry seeks to enhance the understanding of the disease's natural course and variability in severity. It will also assess the management of lymphangioleiomyomatosis within the framework of the French National Plan for rare diseases.

Why it matters

Who can join: the full rules

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

Where it's running

• Hôpital Louis Pradel
  Lyon, France Recruiting

Study contacts

• Principal investigator: Vincent Cottin, MD — Groupe d'Etudes et de Recherche sur les Maladies Orphelines Pulmonaires, HCL
• Study coordinator: Vincent Cottin, MD
• Phone: 33-427-857-700

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Long-term safety of Imatinib for patients with Lymphangioleiomyomatosis

  This study is testing if the cancer drug Imatinib is safe and can help women with Lymphangioleiomyomatosis by seeing how it affects their lung health over time.

  Recruiting at 2 sites Phase 1 Columbia University · New York, New York and 1 other locations · NCT06889168

• Registry for pregnant women with Tuberous Sclerosis Complex and Lymphangioleiomyomatosis

  This study is collecting information from pregnant women with Tuberous Sclerosis Complex and Lymphangioleiomyomatosis to see how their health and their babies' health are affected during pregnancy.

  Recruiting Children's Hospital Medical Center, Cincinnati · Cincinnati, Ohio · NCT06160310

• Collection of biosamples and clinical data for tuberous sclerosis and lymphangioleiomyomatosis

  This study is collecting blood and tissue samples from people with tuberous sclerosis and lymphangioleiomyomatosis to help researchers learn more about these conditions and how they affect the body over time.

  Recruiting at 25 sites National Tuberous Sclerosis Association · Birmingham, Alabama and 25 other locations · NCT05676099

• Long-term safety and effectiveness of sirolimus for treating LAM

  This study is testing how safe and effective sirolimus is for people with lymphangioleiomyomatosis (LAM) over a long period of time while keeping track of their lung health and any side effects.

  Recruiting at 8 sites University of Cincinnati · Stanford, California and 19 other locations · NCT02432560

• Comparing nebulized and inhaled albuterol for lung function in women with LAM

  This study is testing whether using a nebulizer or an inhaler for albuterol helps women with LAM breathe better.

  Recruiting Phase 1/2 National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT01799538

• Understanding the disease process of lymphangioleiomyomatosis

  This study looks at how lymphangioleiomyomatosis affects the lungs in women and tries to find out what causes the disease to help develop better treatments.

  Recruiting National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT00001465

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.