Improving Care for Transgender and Gender Non-Conforming People with IBD

Summary

​The national census in England and Wales showed that 0.6% of people identify as transgender or gender non-conforming (TGNC). Inflammatory bowel disease (IBD) causes swelling or bleeding in the bowel. We think there are about 2,500 TGNC people with IBD (TGNC-IBD) in England and Wales. TGNC people often have more health problems and get worse healthcare than those who identify with the same gender as at birth, named cisgender people. We know very little about TGNC-IBD people and their specific issues. We worry that we are not giving these patients good care. 

​We will ask anyone in the IBD BioResource who self-identifies as TGNC to complete a questionnaire online. We will ask questions about their disease and any complications with their IBD they have experienced. We can also look at treatments and how well they work. 

​We will also use the clinical data that the BioResource has on these participants to understand TGNC-IBD people better. We will look at this data to see what special needs they have and where doctors and nurses can improve the care they provide. Then, we will share this information with other IBD doctors and nurses to raise awareness and reduce stigma. 

​Our study will help doctors and nurses understand the problems TGNC-IBD patients face. It will make people more aware of TGNC-IBD patients and reduce stigma. This will help improve care for TGNC-IBD patients and TGNC people in general.​ 

Study Update February 2026:

Why was this study carried out?

People with inflammatory bowel disease (IBD) can have serious stomach and bowel problems that affect their daily lives. Transgender and gender non-conforming (TGNC) people are often left out of medical research so doctors do not know enough about how IBD affects them. This study was done to understand their health, mental wellbeing, and experiences with IBD care.

How long has this research taken?

The survey and analysis for this study took place over several months. It was combined with data from the BioResource that has been collected before over many years.

What samples or data were collected?

No new blood or tissue samples were taken. Instead, researchers used health information already stored in a the BioResource database. They asked participants to complete an online questionnaire about their symptoms, mental health, quality-of-life, and gender-affirming care.

What happened to the data?

The data were safely stored, anonymised (so no one could be identified), and analysed by researchers. TGNC participants were compared with a similar group of non-transgender people with IBD.

What did you find out?

TGNC people with IBD often waited longer to be diagnosed, were more likely to need hospital care or surgery, and had much higher rates of mental health conditions like anxiety or depression. IBD also had a big impact on their daily lives and energy levels.

How will this help treat or cure disease?

Understanding these challenges helps doctors see where care is falling short and where extra support, especially mental health support, is needed.

What happens next?

Future research will follow people over time to improve care and make IBD services more inclusive and supportive for everyone.