Introducing the DataLoch Respiratory Registry
03/04/2023
The DataLoch Respiratory Registry is the first registry developed by the team. It is designed to improve support for respiratory researchers by offering a smoother data-selection experience, a streamlined application process, and straightforward access to related expertise.
The data that have been included
This registry brings together data about South-East Scotland residents with acute and chronic respiratory conditions, specifically COPD (Chronic Obstructive Pulmonary Disease) and ILD (Interstitial Lung Disease). Asthma-related data will be added in the near future.
Frequency and overlap of people with COPD and/or ILD conditions within the overall DataLoch Respiratory Registry as at 31 March 2023
The DataLoch Respiratory Registry aligns with respiratory registries hosted in England (CPRD) and Wales (SAIL Databank), which therefore offers significant opportunities for researchers wishing to explore questions across the three nations.
Accessing the registry
The first step for researchers is to register for an account through our website and provide some basic details such as their organisation and contact email address: register for an account
Once registered, researchers can find the registry in the DataLoch_Respiratory entry in our Metadata Catalogue, which offers more detailed definitions of the data that are potentially available. For access to the data itself, a full DataLoch application needs to be completed and discussed with the DataLoch team prior to submission through our usual approval processes.
Selecting data
A bespoke and simplified data-selection form has been created for researchers seeking access to data from our Respiratory Registry. This form is available through our Metadata Catalogue. The main decisions from the researcher are to select the cohort of interest – COPD and/or ILD – as well as the period for which data should cover.
Collaborating with registry specialists
For researchers seeking additional support or clinical expertise to assist with the development of their plans, there is the option to contact some of the people behind the registry’s development. These key contacts include Professor Sir Aziz Sheikh (University of Edinburgh), Professor Jenni Quint (Imperial College London), Mon Fletcher OBE (University of Edinburgh), Dr Wendy Inglis Humphrey (University of Edinburgh), Chris Orton (SAIL Databank), and Sara Hatam (DataLoch). Full contact details are provided within our Metadata Catalogue.
Development of the registry
The development of the DataLoch Respiratory Registry was funded by MRC Capital Funding [MC_PC_22006] and was carried out with the support of BREATHE - The Health Data Research Hub for Respiratory Health [MC_PC_19004] in partnership with SAIL Databank and Imperial College London.
BREATHE was funded through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK.
We wish to acknowledge the support of Professor Sir Aziz Sheikh (University of Edinburgh), Professor Jenni Quint (Imperial College London), Chris Orton (Swansea University) and Dr Luke Daines (University of Edinburgh) in the creation of this registry.
Further DataLoch developments
The DataLoch Respiratory Registry is one of the enhancements we are launching in March 2023. In our most recent update, we have developed new demographics and observations tables that improve the reliability of the data and enable researchers and those in the NHS to more intuitively access certain data, such as ethnicity, sex, smoking status, and blood pressure.
