Clinical genomics for monogenic IBD and congenital diarrhoea improving mainstream care pathways
Introduction to project
The aim of this transformation project is to improve patient care in relation to monogenic inflammatory bowel disease (IBD) by implementing genomic medicine care pathways into routine NHS care. The project also aims to provide increased learning opportunities within primary, secondary, and community healthcare settings.
What is the condition?
Inflammatory bowel disease, or IBD, is a chronic condition that leads to soreness in the gut. It can be divided into Crohn’s disease, ulcerative colitis and IBD unclassified. Different people will have different patterns and types of disease. In addition, it’s very difficult to predict what will happen, which medicines are best and how we can treat the IBD in the best way.
For most patients IBD is caused by a mix of genetics and environmental risks, such as gut bacteria, but it’s difficult to know the exact cause in a person or in a family.
What are we doing?
Monogenic forms of inflammatory bowel disease (IBD) are a group of rare conditions that have a major impact on quality of life of patients since many established treatment options fail to work. The aim of this transformation project is to improve patient care in relation to IBD by implementing genomic medicine care pathways into routine NHS care. Multidisciplinary Team (MDT) networks will be set up for medical professionals to discuss patients where a genetic cause of the disease might help to deliver personalised medicine. This will make specialist advice and support more accessible to trusts across the Central and South (CAS) region and inform the best possible treatments and care for patients.
The network of multidisciplinary teams will help to inform which patients may benefit most from genomic medicine, which genetic findings can explain the disease and identify variants that might require additional research.
What training is available?
Education will be provided though a one-day seminar where the clinical teams from Oxford, Southampton and Birmingham will meet along with colleagues from other UK centres to discuss best practice in monogenic IBD genomics, challenges, new technologies and research findings. External stakeholders such as CICRA will be invited to attend to support effective collaboration between the different organisations. To find out more please contact us using the details below.
Education in primary and secondary care settings will be supported through creating educational materials.
Where can I find out more?
Crohn’s and Colitis UK- https://crohnsandcolitis.org.uk/
Immunodeficiency UK- http://www.immunodeficiencyuk.org/
CGD society- https://cgdsociety.org/