Partnering with the Registry to run Studies
The Registry has built a secure web-based N3-compliant infrastructure for collecting data, and this can be used to collect data for specific research studies as well as Registry data.
Dr Keith Bodger describes how the IBD Registry can be used for research.
Webtool for research projects
The IBD Registry can provide a comprehensive infrastructure for research partners through its web-based infrastructure. 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.
How to partner with us
The Registry team can help support pre-study preparation by working with you to establish what is needed and so the costs that will be involved (for grant applications etc). We also have experience in and a document infrastructure for the templates that will be required, including information governance, data security and formal working agreements.
Contact us to discuss running your research project in partnership with the Registry and our national data collection infrastructure
Data captured as part of a research partnership will inform service standards, clinical guidelines, quality improvement and assurance programmes. The Registry’s web-based data collection infrastructure has facilitated these 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.