Registry for lymphangioleiomyomatosis cases in France
National Lymphangioleiomyomatosis Registry, France
This study is gathering information about people with lymphangioleiomyomatosis in France to better understand how the disease affects them and how it is being treated.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Groupe d'Etudes et de Recherche sur les Maladies Orphelines Pulmonaires Academic / other |
| Locations | 1 site (Lyon) |
| Trial ID | NCT01484236 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this registry include patients diagnosed with sporadic lymphangioleiomyomatosis or those associated with Tuberous sclerosis who have been seen in consultation since January 1, 2008.
Not a fit: Patients who do not have a diagnosis of lymphangioleiomyomatosis or have not been seen in consultation since the specified date may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved understanding and management of lymphangioleiomyomatosis, ultimately benefiting patients through better diagnosis and treatment strategies.
How similar studies have performed: While this registry approach is relatively novel for lymphangioleiomyomatosis, similar registries for rare diseases have shown success in enhancing understanding and management of those conditions.
Eligibility criteria
Show full inclusion / exclusion criteria
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 this trial is running
Lyon
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.