The IBD Registry has closed current activities while we are in discussions through 2024 about possible transition to an NHS organisation. 

Supporting better care in IBD

IBD UK Patient survey 2023 Powered by IBD Registry
Service survey 2023

The IBD Registry is delighted to be one of the partners in IBD UK, which includes 17 professional bodies, royal colleges and patient organisations working together to improve care and treatment for everyone affected by IBD.

IBD UK developed the IBD UK Benchmarking, which first took place in 2019 and is designed to encourage IBD services to recognise what they are doing well and identify where they need to improve. It is comprised of the IBD Patient Survey for people with IBD and the IBD Service Survey for IBD services. The Benchmarking is taking place again in 2023, with both surveys closing on 11 September and reports to follow.

The IBD Registry is proud to be leading on the information governance and data management of the surveys on behalf of IBD UK. We continue to bring together health data from people with IBD across the UK to help improve treatment and care, and support research. More information on how your data is stored safely and securely is available here.

The IBD Patient Survey provides an opportunity for people with IBD to anonymously share their experiences of treatment and care to establish the first accurate picture of IBD care and treatment in the UK since before the COVID-19 pandemic. This, combined with IBD services self-assessing against the IBD Standards, provides a powerful and unique opportunity to raise standards of care for everyone with IBD.

The results of the surveys will be benchmarked against the IBD Standards and compared to results from the last surveys in 2019, which were outlined in the IBD UK report Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change. Find out more here.

Better care for IBD

IBD Report

The IBD UK report sets out the UK-wide picture of IBD care, based on the results from the 2019/20 IBD Benchmarking Tool, which brings together the experiences of over 10,000 people with IBD and 72% of IBD services across the UK.

It reveals that care urgently needs to be improved. In particular:

  • Adults and children are waiting too long for a diagnosis of IBD
  • The wider symptoms of IBD, such as pain, fatigue and emotional wellbeing are often not addressed
  • People are not getting specialist advice and treatment quickly enough
  • There are not enough specialists, including IBD nurse specialists, dietitians and psychologists and care is often not joined up

IBD Standards 2019

The IBD Registry is proud to be an integral partner of IBD UK which launched the updated IBD Standards in June 2019 at the BSG Meeting in Glasgow.  The Standards define what quality care means for IBD patients and are the first update for six years.

The first IBD Standards were launched in 2009, after the first audit of IBD Services in 2006 by the Royal College of Physicians. This highlighted large variations in standards of care.  The Standards were further updated in 2013 and are the foundation for the 2015 NICE quality standard on IBD.

See our statement welcoming the new Standards.

What are the Standards?

The IBD Standards are a framework of statements, created by IBD UK that define what should be put in place to deliver high-quality healthcare for people with Crohn’s and Colitis.

The IBD Standards say what high-quality care should look like at every point of the patient journey – from pre-diagnosis, newly diagnosed, flare management, surgery, inpatient care and ongoing care; as well as way that IBD service needs to be organised.

There are 59 statements that include:

  • design and delivery of the multidisciplinary IBD service
  • pre-diagnostic referral pathways
  • protocols
  • timeframes
  • holistic care of the newly diagnosed patient
  • flare management to support patient empowerment
  • self-management and access to specialists where required
  • surgery including appropriate expertise
  • pre-operative information
  • psychological support and post-operative care
  • inpatient medical care delivery;
  • and ongoing long-term care in the outpatient department and primary care setting including shared care

The IBD Registry’s role in the IBD Standards

With its established IBD data collection network, the Registry has a special role to play in quality standards, providing the measuring and monitoring element in support of the defined standards.  Our goal is to be able to provide as many standards-aligned data results as possible using our existing data collection processes, and so save clinical teams the burden of multiple data entry.

IBD Standards Core Statements

You can learn more about the IBD Standards at the IBDUK website www.ibduk.org