Partnering with the Registry

Research

The IBD Registry can provide a comprehensive infrastructure for research partners through its Web Tool, which is currently being used in over 60 sites. The Web Tool is a relatively low-cost and flexible system. It can be updated with research specific data fields directing clinicians to capture the information required.

Data captured as part of a research partnership will inform service standards, clinical guidelines, quality improvement and assurance programmes. The Registry Web Tool is currently facilitating two research projects:

Anaemia Service Evaluation (ASE): This project is a joint working initiative with Pharmacosmos, and aims to evaluate the level of service IBD patients receive and how they are treated. The study will gather data on 100 patients with IBD. Iron levels will then be monitored over 12 months to determine how well iron deficiency anaemia is managed in this cohort of patients.

The UK Vedolizumab Real Life Experience Study in Inflammatory Bowel Disease (VEST) aims to gather outcomes data on vedolizumab in a real-world clinical setting. Hospitals across the UK are currently participating and the study is open to new sites. Eligible patients have to be adults who are due to start vedolizumab in standard care. Data is obtained from the patient’s own reported outcomes, clinical assessments and the medical notes including disease characterisation, medications, previous history and blood test results.

Industry

In 2016, an IBD Registry Industry Working Group was set up, to focus on practical ways in which industry can help to accelerate Registry uptake.

Working with the Registry executive, the group has published a prospectus for appropriate industry involvement, including transparent processes for collaborative data projects. They have agreed a fair funding framework for all companies engaged in IBD to support the Registry.

To help IBD clinical teams to collect local data, the group has established a grant fund to support additional hours for data entry.

The Industry Working Group is also launching a field support initiative in the autumn of 2017. Field representatives trained by the IBD Registry team will visit hospitals in a non-promotional capacity to offer advice and support.

The current members of the Industry Working Group are Dr Falk Pharma, Janssen, Pharmacosmos, Takeda and Tillotts.

The Industry Working Group was featured in a recent edition of Pharma Times. To find out more go here.

 

The future of collaboration between industry and the NHS.

What has the Industry Working Group achieve?

What can we learn from the Industry Working Group?

For more information on collaborating with the Registry please contact: josh@dovetailstrategies.com

Funding

Funding for the IBD Registry has been provided by: the British Society of Gastroenterology, AbbVie, Allergan, Celltrion, Dr Falk, Janssen, MSD, Napp, Otsuka, Pfizer, Pharmacosmos, Shire, Takeda, Tillotts and Vifor as well as private donors. We would like to thank all of these organisations and individuals for their invaluable support.

Find out more about...

 

Latest News

HES reports

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 Bodger

read more

Richard Driscoll 1950-2017

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

Patient Records Pass 30,000

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

Quarterly Reports out this Month

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.

read more

We’re updating the drug dictionary

The IBD Registry are currently in the process of updating the core dataset, in particular we are updating and amending the list of medications in the drug dictionary…

read more