Observational Study of Rare Cystic Lung Diseases (ORCyD)
Research type
Research Study
Full title
An Observational Study in patients with Rare Cystic Lung Diseases to improve care through clinically relevant research
IRAS ID
328098
Contact name
Simon Johnson
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
5 years, 0 months, 1 days
Research summary
Rare cystic lung diseases (RCLD) are complex disorders ranging from reasonably well characterised entities to others which pose significant diagnostic and management challenges. Like most people affected by rare diseases, individuals with RCLD face common issues including diagnostic delays, high healthcare needs and the isolation that comes with a rare diagnosis. With little prognostic information available, poor access to specialist knowledge and services can result in anxiety and fragmented care. The increasing use of CT for investigation of both pulmonary and extra-pulmonary symptoms has led to increasing identification of RCLD and managing these patients is becoming part of respiratory care.
The overarching aim is to study a cohort of patients and develop a resource of clinical data and biosamples from patients with rare cystic lung diseases with the aim of improving the care of these patients through clinically relevant research, by:
*Recording standardised clinical phenotype data obtained through NHS care for people with rare cystic lung diseases.
*Obtaining linked serum, plasma, DNA and cell free DNA samples on these patients.
*Where tissue has become available through clinical procedures, obtain excess material.
*Storing linked computerised tomography imaging data.
*Recording serial outcome, clinical, lung function and date of death dataREC name
North West - Greater Manchester West Research Ethics Committee
REC reference
24/NW/0013
Date of REC Opinion
10 Jan 2024
REC opinion
Favourable Opinion