Quarterly Reports out this Month

Patient Consent Update

Good news!  We have received an extension of our Section 251 exemption for England and Wales until May 2018, which means that consent is assumed unless patients opt out, and data can be submitted without formal consent. 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.

Consent materials are available here. We urge all IBD Teams to ask patients for formal consent. Thank you to all the teams that have been doing this; being able to demonstrate the progress you have made in the proportion of patients consented was fundamental to the exemption being extended.

Data & Reporting

Quarterly Data Reports and Submission

The first quarterly reports will be sent to sites in October. Participating sites will receive a summary profile of the data they have submitted to the Registry in June 2017. Sites that are uploading data as part of the Biologics Audit will also receive a summary showing compliance with the biologics KPIs. Any teams who missed the deadline will receive an example data report.  At a later date, an additional report will show Registry data linked with HES data.
The next data submission deadline is 29th December. If you need any help at all in preparing for this, or if you have not yet registered with NHS Digital, please email support@ibdregistry.org.uk.

Drug Dictionary Update

Last month the Registry collected feedback from sites using the WebTool and PMS regarding new drugs to be included in the IBD Registry drug dictionary. Thank you to all the sites who replied with suggestions and comments. The Registry team will be reviewing the suggestions and comments this month, and we will keep you informed in future newsletters as to when and how these changes will be implemented.

Resources for Sites

IBD Registry Field Support Programme

The Registry has successfully made contact with most IBD teams, but there are some gaps. With limited resources and a small London-based team, it has proved challenging to reach 100% of hospitals.

To address this problem, the IBD Registry’s Industry Working Group (IWG) is launching a field support initiative: field based personnel from Dr Falk Pharma, Janssen, Pharmacosmos, Takeda and Tillotts will supplement the Registry team by contacting IBD leads on their behalf.

Field representatives trained by the IBD Registry team will visit hospitals in a non-promotional capacity to offer advice and support. Any information collected during these meetings will be held by the Registry and not by the pharmaceutical companies.

Sites will be notified by email beforehand and can easily opt out if they wish to do so.

Opportunities

Caldicott Guardian Opportunity

The IBD Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact support@ibdregistry.org.uk for more information.

PMS User Group

Working in collaboration with CIMS, we have launched a PMS User Group for sites using InfoFlex. The purpose of the group is to collate feedback from clinical teams using the software. To gather feedback from as many users as possible, we have sent a link to an online survey to the IBD Registry clinical lead and nurse specialist at each hospital using the InfoFlex PMS. We’d be very grateful if you would complete the survey before the 5th October.

With our thanks for your continued contribution to the IBD Registry,

              

Dr Stuart Bloom, IBD Registry Chair                Dr Fraser Cummings, IBD Registry Clinical Lead

Find out more about…

Latest News

For clinical teams: next submission is 10 July 2020

Important information for Registry-participating clinical teams: with the COVID-19 outbreak, to ease pressure on clinical teams we postponed the last (April) submission deadline.  The next submission deadline is 10 July 2020 for data to the end of June, including all...

read more

Update on the COVID-19 UK IBD Tool for patients

Over 32,000 people in the UK with IBD have self-assessed their risk since launch on the 1 April 2020.  Between them, they have identified the 175 hospitals (Trusts and Health Boards) that provide them with care, and the data has been shared back to their doctors which...

read more

Abbreviated clinician news for IBD Teams – March 2020

Given the special circumstances putting pressure on IBD teams and wider health services, we have created some in-depth articles below in an easy to read format:  Switchers: Changing originator biologic to biosimilar Changing originator biologic to biosimilar With many...

read more

Registry surpasses 60,000 patient records

Huge congratulations to IBD clinical teams across the country - we have surpassed the 60,000 patient record mark. At time of writing we hold 63,181 records. 62 IBD teams submitted for this last quarter, 24% more than the same period last year. Figure: number of...

read more
%d bloggers like this: