Interstitial Lung Disease Exacerbations Study
This study focuses on a group of lung conditions called Interstitial Lung Disease (ILD), which scar the lungs and make breathing harder. Sometimes, people with ILD experience a sudden, serious worsening of their symptoms, called an 'acute exacerbation'. While we know a bit about these exacerbations in one common type of ILD, we don't know enough about them in other forms of the disease. This research will look at existing patient records from UK hospitals to understand more about these sudden flare-ups. We want to find out who is affected, how they are currently treated, and which treatments seem to lead to better results. The aim is to improve care and develop clearer guidelines for patients experiencing these difficult episodes.
At a glance
What is this study about?
Interstitial Lung Disease (ILD) is a broad term for many conditions that cause scarring in the lungs, making it harder for them to take in oxygen. While ILD often gets worse slowly over time, sometimes people can have a sudden and very serious worsening of their symptoms. Doctors call this an 'acute exacerbation'. Currently, we don't have clear guidelines on the best way to treat these sudden flare-ups, especially for types of ILD other than the most common one, called Idiopathic Pulmonary Fibrosis (IPF).
This study is designed to help us understand more about these sudden worsenings by looking at information from existing patient health records in the UK. We'll be studying details like the patient's type of ILD, their test results when they had a flare-up, and the treatments they received, including medicines like steroids. Our goal is to see if certain patient characteristics or treatments are linked to better or worse outcomes. We also want to learn how NHS services are currently helping patients with these lung exacerbations.
Ultimately, the information we gather from this study will be used to improve the care for people with ILD. It will help us design future studies to test new treatments, develop clearer and more effective treatment guidelines for doctors, and make sure patients get the best possible care when they experience these sudden and serious lung problems.
Key takeaways
- Looks at existing medical records, not new patient involvement.
- Aims to understand sudden worsenings (exacerbations) of ILD.
- Hopes to improve future treatment guidelines and patient care.
- No direct patient participation, appointments, or medications.
- Your personal details remain private and protected.
Who may be eligible?
This study is looking at the medical records of adults aged 18 or over. To be included, patients must have been admitted to an NHS hospital in the UK between September 2022 and August 2023 because their Interstitial Lung Disease (ILD) suddenly got worse.
Specifically, their medical records need to show that they have ILD that involves scarring (fibrosis) in the lungs and that their breathing symptoms got worse. Their hospital admission must have been specifically due to their lung condition and not for other unrelated health issues, such as a blood clot in the lung or heart problems.
Patients would not be included if they don't have ILD with scarring, if their admission was for something other than their lung condition getting worse, or if they have previously opted out of their NHS data being used for research. This study only looks at existing records, so you don't need to do anything to be involved unless you've opted out of data sharing.
- Were you 18 or older when you were admitted to hospital?
- Did you have Interstitial Lung Disease (ILD) with some scarring in your lungs?
- Were you admitted to an NHS hospital between Sept 2022 and Aug 2023?
- Was your hospital admission mainly because your ILD symptoms suddenly got worse, not for other reasons like heart problems?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
This study does not involve patients directly. Researchers will be looking at existing, anonymised medical records from adults who were admitted to an NHS hospital between September 2022 and August 2023 with a sudden worsening of their Interstitial Lung Disease (ILD). You will not be asked to attend any extra appointments, take any new medication, or have any follow-up checks specifically for this study. The study uses information that has already been collected as part of your routine NHS care. If you have previously opted out of your NHS data being used for research, your records would not be included.
Potential risks and benefits
Locations (3)
- Royal United Hospitals Bath NHS Foundation TrustBath, United Kingdom
- North Bristol NHS TrustBristol, United Kingdom
- Royal Devon University Hospitals NHS Foundation TrustExeter, United Kingdom
Common questions
What is an 'acute exacerbation' of ILD?
It's a sudden and serious worsening of lung symptoms, like breathlessness or coughing, in someone who has Interstitial Lung Disease.
Will I have to do anything if my records are included?
No, you don't need to do anything. The study only looks at information from existing medical records that have already been collected during your hospital care.
Is my personal information safe?
Yes, researchers will only use anonymised information from your records. Your name and other identifying details will not be accessible to them.
What will this study achieve?
It aims to help doctors better understand who gets these sudden lung flare-ups and what treatments work best for them, leading to improved care in the future.
Can I choose not to have my data used?
Yes, if you've previously opted out of your NHS data being used for research purposes, then your records will not be included in this study.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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