Chronic Respiratory Disease Participant Engagement Study

Conditions studied

Interstitial Lung Disease (ILD), Chronic Respiratory Diseases, Alpha-1 Antitrypsin Deficiency (AATD), Chronic Obstructive Pulmonary Disease (COPD), Asthma, Bronchiectasis

About this study

This study is designed for adults who have, or suspected to have, a long-term respiratory (lung) condition such as Alpha-1 Antitrypsin Deficiency (AATD), chronic obstructive pulmonary disease (COPD), asthma, bronchiectasis, or interstitial lung disease (ILD). The aim of the study is to help participants become familiar with the clinical trials unit environment and research team before deciding whether they would like to take part in future clinical trials. Participants will attend a study visit at the clinical trials unit, where they will receive a guided tour of the facilities and undergo a range of routine health assessments. These may include a review of their medical history, measurements of height, weight, blood pressure and oxygen levels, breathing tests, blood tests, heart tracing (ECG), liver assessment, and questionnaires about their symptoms and quality of life. Some participants may also undergo genetic testing if it is clinically appropriate and previous results are not available. The information collected will help establish a clinical baseline and improve understanding of how respiratory diseases affect people in everyday life. The study will also explore how symptoms and quality of life relate to clinical measurements and other health information. Participants will be contacted after their visit to discuss any clinically relevant findings and to answer any questions they may have. If a previously unrecognised condition is identified, participants will be advised appropriately and, with their consent, their GP may be informed to support any further care that may be needed. The findings from this study may help improve the design of future clinical trials and support the development of more patient-centred research.

Primary outcomes

• Number of patients indicating willingness to be re-contacted for future clinical trials (Until the end of the study (up to 5 weeks)])
• Participation feedback questionnaire results using Participant Feedback and Clinical Research Experience Questionnaire (Until the end of the study (up to 5 weeks)])