UK LAM Cohort Version 1.0
Research type
Research Study
Full title
Comprehensive cohort study of UK patients with lymphangioleiomyomatosis (LAM)
IRAS ID
117828
Contact name
Simon Johnson
Contact email
Sponsor organisation
The University of Nottingham
Research summary
Lymphangioleiomyomatosis (LAM) is a rare and currently incurable lung disease with few therapeutic options. Almost exclusively in women LAM presents as a number of severe (mainly) pulmonary symptoms which in most cases results in progressive respiratory failure. Survival is 10-30% at 10years although long-term survivors have been described.
The main research objective of the study is to gather a set of clinical samples (serum, urine and optionally tissue (from clinical intervention) and DNA) from women with LAM and healthy control women (just blood, urine and, optionally DNA). Blood and urine samples will be used to try and find and test a biomarker for LAM (a signature molecule or set of molecules which show altered levels or characteristics in patients with LAM). This information could lead to a specific test for LAM and also provide information on why people get LAM, how it could be treated and how the disease progresses.
Also DNA will be collected from blood which will allow studies into whether there is a genetic cause of LAM. The tissue taken will provide an invaluable research resource allowing the clinical information known about the patient to be matched with differences seen in tissue samples.REC name
East Midlands - Derby Research Ethics Committee
REC reference
13/EM/0264
Date of REC Opinion
31 Jul 2013
REC opinion
Further Information Favourable Opinion