Co-morbidity and Refractory Asthma - UK Severe Asthma Registry

Summary

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.

Conditions

• Asthma

Sponsors & Collaborators

• Royal Brompton & Harefield NHS Foundation Trust

  collaborator OTHER

• University Hospital Birmingham NHS Foundation Trust

  collaborator OTHER

• Guy's and St Thomas' NHS Foundation Trust

  collaborator OTHER

• Barts & The London NHS Trust

  collaborator OTHER

• University Hospitals, Leicester

  collaborator OTHER

• Nottingham University Hospitals NHS Trust

  collaborator OTHER

• University Hospitals of North Midlands NHS Trust

  collaborator OTHER

• Sheffield Teaching Hospitals NHS Foundation Trust

  collaborator OTHER

• Hull University Teaching Hospitals NHS Trust

  collaborator OTHER_GOV

• The Leeds Teaching Hospitals NHS Trust

  collaborator OTHER

• Cambridge University Hospitals NHS Foundation Trust

  collaborator OTHER

• University Hospital Southampton NHS Foundation Trust

  collaborator OTHER

• Portsmouth Hospitals NHS Trust

  collaborator OTHER_GOV

• Oxford University Hospitals NHS Trust

  collaborator OTHER

• University Hospital Plymouth NHS Trust

  collaborator OTHER

• University Hospitals Bristol and Weston NHS Foundation Trust

  collaborator OTHER

• Royal Devon and Exeter NHS Foundation Trust

  collaborator OTHER

• Taunton and Somerset Hospital

  collaborator OTHER

• Lancashire Teaching Hospitals NHS Foundation Trust

  collaborator OTHER

• Newcastle-upon-Tyne Hospitals NHS Trust

  collaborator OTHER

• NHS Greater Glasgow and Clyde

  collaborator OTHER

• Queen's University, Belfast

  lead OTHER

Eligibility

Min Age

16 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2020-08-26

Primary Completion

2025-08-26

Completion

2025-08-26

Countries

• United Kingdom

Study Locations