Ignite Creation Date:
2024-05-05 @ 11:22 AM
Last Modification Date:
2024-10-26 @ 9:02 AM
Study NCT ID:
NCT00001869
Status:
COMPLETED
Last Update Posted:
2008-03-04
First Post:
1999-11-03
Brief Title:
Official Record of Patients Diagnosed With Lymphangioleiomyomatosis LAM
Sponsor:
National Heart Lung and Blood Institute NHLBI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
Lymphangioleiomyomatosis LAM Registry
Status:
COMPLETED
Status Verified Date:
2003-04
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
Pulmonary lymphoangioleiomyomatosis LAM is a rare destructive lung disease typically affecting women of childbearing age Currently there is no effective therapy for the disease and the prognosis is poor
In order to better study this disease the National Heart Lung and Blood Institute NHLBI has developed a registry to keep an official record of patients diagnosed with LAM This research project will collect data from 6 health care centers as well as outside physicians Researchers hope to provide valuable information about the rate of lung destruction and quality of life in patients with LAM
Patients participating in this study will be followed for 5 years Tissue collected from these patients may contribute to the development of future studies on the disease processes of LAM
In order to better study this disease the National Heart Lung and Blood Institute NHLBI has developed a registry to keep an official record of patients diagnosed with LAM This research project will collect data from 6 health care centers as well as outside physicians Researchers hope to provide valuable information about the rate of lung destruction and quality of life in patients with LAM
Patients participating in this study will be followed for 5 years Tissue collected from these patients may contribute to the development of future studies on the disease processes of LAM
Detailed Description:
LAM is a rare disease that predominantly affects women of child-bearing age To study in more detail this rare disease this multi-center project will establish a registry of persons with LAM By combining data from 6 centers and outside physicians this study may yield valuable information regarding the rate of decline in pulmonary function and quality of life in individuals with LAM These patients will be followed over a five-year period Tissue collected from study participants may facilitate future studies into the molecular basis of LAM
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 99-H-0020 | None | None | None |