Co-morbidity and Refractory Asthma - UK Severe Asthma Registry
Co-morbidity and Refractory Asthma - UK Severe Asthma Registry
A "Clinical Registry" is a database which contains clinical information about people with
 different medical conditions. They are used in many countries throughout the world to help
 medical teams to better understand specific diseases and improve the care and treatment of
 patients.

 The UK Severe Asthma Registry has been collecting data on patients attending Severe Asthma
 Clinics in the UK since 2007.

 After obtaining appropriate consent from patients to use their information, data is entered
 by the patient's own clinical team and it is kept up-to-date to follow clinical progress and
 response to treatments. Very strict controls are in place to make sure individuals cannot be
 identified from the Registry and all information available from the National Registry is
 anonymous.

 Apart from the local clinic team, occasionally trusted third parties will also be able to
 identify you, if required to do so, on a strict need-to-know basis. This is necessary to
 ensure that the Registry works efficiently, or as a part of a Research Project, previously
 approved by a Research Ethics Committee.

 Data from the Registry has a number of uses including judging which severe asthma treatments
 are of greater benefit, to identify different subgroups of severe asthma and trial new
 therapies and to provide information for planning future services for people with severe
 asthma. The use of any information from the UK Severe Asthma Registry requires approval of
 the Steering Committee which is made up of the refractory asthma specialists from across the
 UK and who will have access to data protection, legal and ethics expertise where necessary,
 to safeguard the use of data.

 If the Registry closes, data will be returned to the local clinic team if requested,
 otherwise it will be destroyed. Participation is entirely voluntary and patients can withdraw
 consent form the Registry at any time by informing their local clinical team. The Data
 Controller from the UK Severe Asthma Registry is Queen's University Belfast and the Data
 Processor is Dendrite Clinical Services Ltd which is a commercial provider of database and
 registry systems.
There are currently 14 Networks of UK dedicated Specialist Difficult Asthma Services
 submitting data to the UK Registry: Belfast City Hospital; Royal Brompton & Harefield,
 London; Birmingham Regional Severe Asthma Service; South Thames & Kent Severe Asthma Service;
 East Midlands Severe Asthma Network; North West Midlands Severe Asthma Service; Yorkshire
 Asthma MDT; East of England Severe Asthma Network; Wessex Severe Asthma Network; South West
 Asthma Network; North West Asthma Network, Newcastle Severe Asthma Network and Greater
 Glasgow & Clyde.

 The Registry was set up to standardise clinical services in the UK and facilitate research
 into patients with difficult asthma. Patients that attend difficult asthma services across
 the UK are approached to give consent for inclusion. The Registry is hosted online by
 Dendrite Clinical Systems and admits password protected anonymised data, after fully informed
 written consent is obtained from patients (see Patient Information and Consent sheets). The
 individual centre data can be downloaded locally by registered users for audit purposes. 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.

 Subjects have been entered into the Registry in a non-selected manner and there are currently
 over 4800 subjects in the Registry with detailed demographic, disease characteristics and
 health outcome data. Of these subjects, the majority after detailed assessment fulfil the
 American Thoracic Society definition of refractory asthma, whilst others after detailed
 assessment are identified as having non-refractory asthma.

 The Registry has also been expanded to collect data on bronchial thermoplasty in line with
 NICE Guidance on bronchial thermoplasty for severe asthma
 (http://www.nice.org.uk/guidance/ipg419).

 the Registry with detailed demographic, disease characteristics and health outcome data.

 As part of NHS England Central Commissioning for Specialist Severe Asthma Services, all
 specialist centres in the UK will be required to input data into the Registry to enable
 benchmarking between centres.
Inclusion Criteria:

 1. Referral to a specialist severe asthma clinic in the UK due to inadequate asthma control

 Exclusion Criteria: None