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.
- 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.
- 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.
- Informed consent for research. This allows data to be used by researchers who have received Registry approval to access the Registry data.
- 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…
Continuing its mission to improve the care that people with IBD receive, the Royal College of Physicians is offering IBD teams an opportunity to participate in a new quality improvement collaborative, consisting of three 1-day learning sessions and supported action...read more
Following the establishment of IBD Registry Limited as an independent not-for-profit company, we have moved offices to: The IBD Registry The Ebbisham Centre 6-7 Derby Square EPSOM KT18 8AG Telephone (unchanged): 0203 393 3969 Contact (unchanged):...read more
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
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
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