Patients contribute to our research - thank you!
We are most grateful for the many opportunities to work with patients on research projects that aim to better understand the causes of inflammatory bowel disease and immune defects in children and adults.
Patient representatives contribute to the design of some research projects from the beginning. We are fortunate that in some research projects such as the Paediatric IBD Bioressource patient or parent representatives join the investigator meetings. Some of our research is funded by patient charities.
Guideline for Genomics in monogenic IBD.
Patient stakeholders of four charities contributed to the recent Guideline for Genomics in monogenic IBD. This included representatives of CICRA, CCUK, CGDD society, and the XLP research trust.
A patient-facing document was developed. The document explains the process of genomics, who should be tested, and how the results will be discussed with patients.
Paediatric Inflammatory Bowel Disease - a graphical novel.
Much of our work is focused on the understanding of pediatric inflammatory bowel disease. Explaining the disease mechanisms and the complex investigations needed for young people can be challenging.
To guide communication, Hannah Uhlig has developed a graphical novel.