BTS ILD Registry
The BTS Interstitial Lung Disease (ILD) Registry provides a means of national data collection encompassing two disease areas:
- Idiopathic Pulmonary Fibrosis (IPF)
The aim of the ILD Registry is to provide a means of reviewing nationwide data for these comparatively rare diseases; enabling a greater understanding of their epidemiology and ultimately helping to improve diagnosis and care for patients. BTS would like to thank all sites participating in the ILD Registry - for an up to date list of all sites taking part please see the Participating Sites document in the Related Documents list.
Information for Clinicians
The Society invites clinicians who are interested in participating in the IPF and/or Sarcoidosis Registries to contact Maria Loughenbury at BTS Head Office (firstname.lastname@example.org) for further information about the Registry programme, including how to register for access to the online data collection system. Further information is also available in the Lung Registry FAQs document in the Related Documents list.
Information for Patients
If you are a patient interested in learning more about the Registry please read the Information for Patients document in the Related Documents list. If you would like to join the Registry please speak with your named consultant or another member of the hospital team who is looking after you. If you are a patient who has been diagnosed with either IPF or sarcoidosis and would like more information about the disease please visit the British Lung Foundation (BLF) pages on IPF and on sarcoidosis or contact the BLF helpline. BLF works closely with BTS to promote the Lung Disease Registry. SarcoidosisUK is the only UK sarcoidosis charity. They provide information and support for people affected by sarcoidosis; raise awareness and fund research into a cure.
Annual Reports and Newsletters
Published Annual Reports and newsletters are available via the links below.
BTS ILD Registry Bulletin Issue 2 - October 2016
The ILD Registry is a national longitudinal database for the collection of data relating to two disease areas: IPF and sarcoidosis. Launched in 2013, we currently have 47 hospitals taking part in this important programme, with a further 28 in the process of obtaining approval. There are now over 1,200 patient records held...