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…
Data and reporting Milestone HES reports sent to sites this week Earlier this week, HES reports were sent to all Registry sites that have submitted data to NHS Digital, fulfilling a long-held Registry aim to make information work better for patients, clinical teams...read more
2017 has been a pivotal year in the development of the IBD Registry. Continued hard work from IBD teams across the country has resulted in 33,321 patient records being uploaded by 53 sites. Thanks to an idea from our Industry Working Group, we set up a data entry...read more
The IBD Registry team have realised a long-held ambition to use routinely collected hospital episode statistics (HES) data to supplement the clinical data collected by sites, in a ground-breaking initiative led by Keith Bodgerread more
It is with great regret and sadness that we have to inform you of the untimely passing of our friend and colleague Richard Driscoll. Richard passed away on the morning of Saturday 21st October, following a cardiac arrest last week. He is survived by his wife Aviva,...read more
This month the IBD Registry achieved two participation milestones: we moved past 30,000 patient records (up to 31,614) and now have 51 sites submitting data to the Registry.read more