Co-morbidity and refractory asthma - data from a UK registry
Research type
Research Database
IRAS ID
51472
Contact name
Liam Heaney
Contact email
Research summary
UK Registry of Specialist Difficult Asthma Services
REC name
HSC REC B
REC reference
15/NI/0196
Date of REC Opinion
17 Sep 2015
REC opinion
Favourable Opinion
Data collection arrangements
The Registry records patient demographics including gender, age at diagnosis, race, occupation, smoking status, BMI. Disease characteristics such as asthma medication, unscheduled healthcare visits, exacerbations, hospital and ICU admissions, blood and sputum investigations, allergen testing, pulmonary function are also recorded in the registry.
The aims of the Registry are to facilitate research into the assessment and clinical management of difficult asthma. Individual Centre data is available for local audit and service review in the various centres submitting data to the registry.
Data would only be released for use in research on application to the steering committee of the UK difficult asthma registry co-ordinated by Professor Heaney and after appropriate ethical approval.Research programme
The Registry has the potential to provide and has already provided substantial information on Difficult and Refractory asthma in the UK. The Registry is designed to provide longitudinal follow-up data, and has large numbers which allow sub-group analysis within the population of refractory asthma, which is lacking in this area. The Registry will be used to inform on issues such as clinical outcomes, prevalence and role of co-morbidity, evaluation of specific interventions in severe asthma and health economics of severe asthma in the UK. Data from the Registry has been used to investigate clinical outcomes and phenotypes of severe asthma, smoking status in severe asthma, effects of age on clinical outcomes in severe asthma, the cost of severe asthma in the UK, prevalence of steroid induced morbidity in severe asthma and the data is being used for an audit of the safety of bronchial thermoplasty in severe asthma (see appendix 1 for full details and related publications)
Research database title
UK Registry of Specialist Difficult Asthma Services
Establishment organisation
Dendrite Clinical Systems Ltd
Establishment organisation address
Suite 5, The Hub
Station Road, Henley on Thames
Oxford
RG9 1AY