Local value of Registry data – the Dorset experience

With the launch of the IBD Registry web tool last month, we’re all set for every IBD team in the UK to join in, and to start to benefit from collecting useful local data to help deliver better patient care and support service development. Here Pearl Avery describes the approach she took to entering data on  the Infoflex PMS developed in collaboration with the IBD Registry, how she’s involving patients in the process and how she’s used the information collected in the first ten months to achieve CCG funding for the helpline for the first time in 20 years.

Over 160 teams have now registered to be part of the project. If you haven’t registered yet and would like to, please contact IBDProgramme@rcplondon.ac.uk


All the approvals for full participation by IBD teams in Wales have now been obtained and starter packs have been sent out both to hospitals that have registered to use the IBD Registry Web Tool and those who are using a locally-installed system such as the InfoFlex PMS, Emis or Rotherham.


We’re holding a workshop for teams in Scotland to find out more about how Registry participation fits within the National Blueprint For Inflammatory Bowel Disease In Scotland. The meeting will be in Glasgow on Wednesday 2nd November from 2-6pm. To register please visit http://ibdrmeetings.eventreference.com/

Scotland and Northern Ireland

Approvals are now in place for IBD teams in Scotland and Northern Ireland to use the Web Tool, and starter packs will be sent this week to those sites who have registered to do so. Sites that have registered to participate using a locally-installed system can also begin or continue to collect patient data.  The Information Governance approvals and the data safe haven arrangements for teams in Scotland and Northern Ireland to submit data to the Registry are not yet finalised, but we’ll update you in future newsletters.

Focus on biologics

To deliver immediate local value to teams and patients, the Transition Steering Group has proposed reporting on a set of key performance indicators on biologics in this transition year, with the goal of building a UK-wide register of all people receiving biological therapies for IBD by the end of 2017. The combined UK data will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care.

As a continuation of the biologics audit, the programme remains on the Quality Accounts list and the national clinical audit and patient outcomes programme (NCAPOP) in England.

New consent materials

Following the extension of our Section 251 exemption for England and Wales until May 2017, consent is assumed unless patients opt out, and data can be submitted without formal consent having been obtained. Posters (available from simone.cort@ibdregistry.org.uk) must be prominently displayed in clinic so that patients know your team is participating in the IBD Registry, but this extension gives clinical teams more time to gain written consent from all their patients.

Following discussions with Crohn’s and Colitis UK and CICRA, we’ve added a question to the consent form to allow for the future use of fully anonymised and aggregated data in reports to health-related companies with an interest in IBD. The new consent materials will be sent to registered users and are available here. (Advice regarding the additional consent question is being sent to those IBD Teams that have already obtained consent from some patients.)

What to do next

If you’ve registered you will have information about what you need to do to participate.  If you haven’t already done so, please register to be part of the programme using the form at Registration Form for participating in the IBD Registry PDF

If you’d like more information on any aspect of joining the IBD Registry or entering data please contact IBDProgramme@rcplondon.ac.uk

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