Research Database for patients with tracheobronchial amyloidosis
Research type
Research Database
IRAS ID
340761
Contact name
Monica L L Mullin
Contact email
Research summary
Research Database for patients with tracheobronchial amyloidosis
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
24/EE/0111
Date of REC Opinion
20 Jun 2024
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This database will include relevant patient, disease and treatment details for patients seen at UCLH for tracheobronchial amyloidosis. This data will include age at diagnosis, disease sites involved, lung function tests, history of bronchoscopies and procedure details, treatment history and patient outcomes including death. It will be stored and maintained anonymously. Any collected questionnaires from patients will also be anonymous and linked by study IDs. Prior to collecting questionnaire data, patients will be consented to participation in the database. These questionnaires will include symptoms, quality of life and experience of healthcare for patient centred outcomes.
Research programme
The research database will address a large evidence gap for patients with tracheobronchial amyloidosis. This research has the opportunity to support knowledge improvement for a rare disease given the relatively large patient cohort treated at UCLH.
Research database title
Research Database for patients with tracheobronchial amyloidosis
Establishment organisation
University College London Hospital
Establishment organisation address
235 Euston Road
London, England
NW1 2BU