A patient registry is a survey that collects information about people with a specific medical condition. The information is collected by healthcare professionals, and it is then held on a secure and confidential computer database.
The British Thoracic Society has recorded data on 5,759 patients (with their consent) from 81 hospitals. This includes 4,841 patients with idiopathic pulmonary fibrosis(IPF), and 918 patients with sarcoidosis.
Clinical trials capture very specific information relating to one question, while registries can capture a much wider range of information – putting the data together to help give us the bigger picture.
They do this by capturing routine data from clinical practice: lung function, CT scans, treatment responses, doctor attendance, waiting lists, and more.
The BTS UK ILD Registry was set up to get a better understanding of the IPF landscape. By collecting information from a large group of people over time across the UK, we can gain a better understanding of how many people are affected by the disease, what support they need, and chart trends in treatment and outcomes.
In early 2023, the Registry will be expanding to collect data from people affected by ALL forms of fibrotic ILD. This move reflects changes to NICE guidelines for the prescribing of anti-fibrotics made during 2021- 2022.
Clinicians use it to compare how patients are being treated across the UK and share best practice– ensuring the best possible outcomes for patients. The data is also used by commissioners and policy-makers to ensure patient services are adequately resourced.
“Data shared improves care. The more data we have, the more we know about these conditions and how we can help people.”
Professor Andrew Wilson, BTS UK ILD Registry
There are a number of registries around the world collecting data about patients with IPF. By linking data sets, you can see wider trends. For example, the BTS UK ILD Registry recently linked with the Canadian patient registry to assess whether gender plays a role in patient’s experience of pulmonary fibrosis.
The Registry can also serve as a starting point for clinical trials. Researchers can review the data available to see if it supports or refutes the basis for their research study.
The Norwich Clinical Trials Unit is using the registry in a new randomised clinical trial called ‘Treating idiopathic Pulmonary Fibrosis with the Addition of Lansoprazole (TIPAL)’. The Registry’s role is to capture important information about the patients taking part in the trial. This will ensure that the data that comes out of the trial is of the highest quality.
More than 8,000 people are diagnosed with IPF each year in the UK. Participation in research studies, by people just like you, has helped shape the treatment and support they receive. Taking part in a registry may also open up opportunities to take part in clinical trials and other studies.
Would you like to sign up to the BTS UK ILD Registry? Speak to your pulmonary fibrosis nurse or doctor to learn more.
You can also download the BTS ILD Registry Annual Report 2021 summary to get an overview of their work.