BTS Idiopathic Pulmonary Fibrosis and Sarcoidosis Registry

  • Research type

    Research Database

  • IRAS ID

    233049

  • Contact name

    Monica Spiteri

  • Contact email

    monica.spiteri@uhnm.nhs.uk

  • Research summary

    British Thoracic Society Interstitial Lung Disease Registry Project

  • REC name

    East of England - Cambridge Central Research Ethics Committee

  • REC reference

    17/EE/0346

  • Date of REC Opinion

    20 Oct 2017

  • REC opinion

    Further Information Favourable Opinion

  • Data collection arrangements

    Subjects will be individuals with a new diagnosis of either sarcoidosis or idiopathic pulmonary fibrosis. Data collected will be demographic information together with routine clinical data (blood test results, biopsy results, lung function data, etc.). Annual information on outcome, changes in treatment and clinical parameters will be collected for all individuals entered on to the database. The data collection templates are included with the application for information.

  • Research programme

    The database provides an easily accessed system for prospective data collection in a large number of patients so that the public health and epidemiological status of these conditions in the UK can be established. In turn, this will support the development of research programmes by the UK respiratory research community under the aegis of the British Thoracic Society. The data collected should facilitate the recruitment of individuals in to clinical research trials and will enable the first detailed epidemiological studies of these patient groups in the UK to be undertaken.

  • Research database title

    British Thoracic Society Interstitial Lung Disease Registry Project

  • Establishment organisation

    British Thoracic Society

  • Establishment organisation address

    17 Doughty Street

    London

    WC1N 2PL