Apply to use our data

Who can apply?

We can only accept applications from organisations. Individuals wishing to apply must be affiliated with a named organisation. Details of both the individual applicant and the organisation are required on our Data Request Form.

We receive requests from a range of organisations, including the NHS, charities, academia and companies.

How do I apply?

The IBD Registry welcomes applications from IBD clinicians and other researchers who would like to access IBD Registry data and/or collaborate with the IBD Registry on projects.

We accept data applications for both research and non-research studies. It is important that we know which category your project falls into so we can identify the correct set of data for you.

You can read about the different datasets available on our About our data page. The type of application required depends on the dataset of interest:

 

  • Main IBD Registry dataset – available as aggregated anonymised
  • IBD COVID-19 dataset – for research into COVID-19 and IBD only – available as line-level linkable or aggregated anonymised
  • From 2022 onwards – The Main IBD Registry dataset will be available as line-level linkable or aggregated anonymised

Please note that at present, line-level applications can only be accepted for the COVID-19 dataset. Line-level analysis on our main Registry dataset is currently only permitted if we do the analysis ourselves. Therefore, if you require data from this dataset, then you will need to make an aggregated data request.

Please read our Data Access Guide before making an application. This outlines the process and the elements that you will need to consider.

Once you have read the Guide, if you want to make an application to us, please complete the Data Request Form. There are separate forms for line-level data requests and aggregate data requests (see Resources list below).

If you have any queries about the application process please contact [email protected]

 

Resources

Our approvals process

We take our duty to share data responsibly very seriously. If you want to read about how we review applications and the approval process we have in place, please read our Data Access Guide. This outlines how we fulfil our legal and ethical obligations and ensure that participants’ data is kept secure and confidential.
 
You can also read about how we keep data safe on the patient section of our website.

Acknowledging the people who made this possible

We can only make data available for your research or study project thanks to the clinical teams that support the Registry with ongoing data submission, and the people with IBD who the data ultimately belongs to. It’s really important that these key contributions are recognised in all reports using Registry data, as well at the Registry itself for collection and curation. Our publications guide states the acknowledgements and other key texts that must be included.