A reminder about consent

From May 2016 all patients in the Registry will need to be consented; there are four separate consent questions and our experience so far suggests patients tend to consent to all.

  1. Informed consent for Registry. This allows personal demographic and clinical data to be sent to the IBD Registry. If patients say NO to this then the subsequent questions are not applicable.
  2. Informed consent for linkage. This allows HSCIC to use NHS numbers to extract and link to past Hospital Episode Statistics and then repeat the extraction each year as new HES data is published. It also allows other linkages such as cross-border activity with Wales and Scotland, accessing the mortality register held by Office of National Statistics and potentially other national audits such as bowel cancer.
  3. Informed consent for research. This allows data to be used by researchers who have received Registry approval to access the Registry data.
  4. Informed consent to be contacted for future research studies. This allows data to be matched against criteria for research projects (e.g. a study into side effects from a particular type of treatment). If a patient seems eligible, HSCIC will contact their local clinical team.

There’s more information on consent at https://ibdregistry.org.uk/resources/consent-materials/and https://ibdregistry.org.uk/information-for-patients/

Find out more about…

Latest News

We’re at BSG 2018

If you’re coming to the BSG Annual Meeting in Liverpool next week, do come and say hello to us – we’re at stand B58 in the exhibition.

read more

IBD Registry’s GDPR special addition

As we’re sure you know, the General Data Protection Regulation (GDPR) comes into force on 25th May.

This newsletter is to let you know what’s changed at the IBD Registry to be compliant with the new regulations.

read more

A warm hello from Liz, our new CEO

I have been on board as the CEO of the IBD Registry for just two weeks now, but it has only taken that short time to get a real sense of the goodwill that people have for the Registry, as well as the dedication of the clinical teams in entering data, and the hopes and...

read more

Liz Dobson appointed as CEO

The IBD Registry Board is delighted to announce the appointment of Liz Dobson as the first Chief Executive Officer of IBD Registry Ltd from 16th April 2018.

read more
%d bloggers like this: