Crohn's disease, a type of inflammatory bowel disease (IBD), impacts millions worldwide. The disease is chronic and highly unpredictable, manifesting symptoms such as abdominal pain, diarrhea — sometimes with blood — and severe fatigue. The inflammation can also cause narrow sections in the intestines and create channels from the intestines to other organs, known as fistulas. For many, the disease significantly impacts their lives, making social interactions, school, work, and leisure activities challenging.

Now, recent findings from Norway give cause for optimism. Led by Professor at the University of Oslo, Marte Lie Høivik, the IBSEN III research initiative followed over 400 adults diagnosed with Crohn's disease between 2017 and 2019. Researchers observed that one-year post-diagnosis, most patients reported minimal or no symptoms. “This is great news and provides significant cause for optimism,” says Charlotte Lund, a PhD candidate at the University of Oslo and a physician at Oslo University Hospital.

Crohn's patients experience milder symptoms
Crohn's disease can affect the entire digestive system. However, in this study, 80% of the patients were diagnosed with uncomplicated Crohn's disease, meaning inflammation in the intestines without severe complications such as intestinal narrowing or fistulas. Additionally, half of the patients had inflammation only in the small intestine.
These findings suggest that more patients now have a milder form of Crohn's disease at the time of diagnosis. “We believe this may be because patients are being diagnosed earlier. Partly due to increased awareness of the disease, encouraging earlier doctor visits, and improved diagnostic practices,” says Professor Høivik.

Biological medications can be crucial for IBD
Biological medications have revolutionized the treatment of Crohn's disease over the past decades. These medications greatly differ from those provided in the 1990s, when the first IBSEN study took place. Biological medications target the immune pathways involved in inflammation, dramatically altering patient outcomes.
Within a year of diagnosis, nearly 40% of patients in the study began biological treatment, underscoring its crucial role in disease management. Lund emphasizes the importance of timely intervention with biological medications.
“Early initiation of biological treatment can be crucial in slowing disease progression and reducing the risk of complications,” she explains.

Fewer patients with Crohn’s require surgery
For patients with severe complications, surgery remains a vital treatment option.The study shows fewer patients requiring surgical intervention than before. The researchers compared their results with one-year data from the initial IBSEN study in the 1990s, to find a significant decrease in surgical needs, from approximately 16% to just 5%.“Milder disease at diagnosis and early initiation of biological medications might be contributing factors,” explain Vibeke Strande, a Ph.D. candidate at the University of Oslo and a senior consultant at Lovisenberg Diaconal Hospital.

Insight into disease progression over time
Patients involved in the IBSEN III study were diagnosed between 2017 and 2019. During these years, anyone diagnosed with Crohn's disease in Southeastern Norway had the opportunity to participate in the study. “Since Southeastern Norway covers an area equal to over half of Norway's population, the study can provide a good representation of how Crohn's patients are faring across Norway today,” Lund states.

IBSEN III is primarily a descriptive study, not designed to establish causative factors. However, its comparative approach provides valuable insights into the shifts in disease progression over time. “By comparing data from IBSEN and IBSEN III, we can gain insights into how the disease progression has changed over time, especially before and after the introduction of biological treatment,” Lund explains.

Study made possible by patient participation
Looking ahead, the researchers aim to continue following these patients' progress, with five-year evaluations and data analysis already underway. “We hope that these positive trends continue and signify lasting improvements, and a better quality of life for the patients,” says Lund.
She credits the success of the study to patient participation.
“The commitment of our participants is what enabled this research. By attending check-ups and sharing experiences, they contribute invaluable knowledge about Crohn's disease and how treatments can be improved in the future, and they deserve a big thank you” she notes.

Reference:
Lund, C., Strande, V., Hagen, M., Bengtson, M.B., et al. (2024). Low Surgery Rates in Early Crohn's Disease: Results from a Prospective Population-Based Inception Cohort—The Inflammatory Bowel Disease in South-Eastern Norway III Study. Inflammatory Bowel Diseases. ISSN 1078-0998. doi:

About IBSEN III and funding:
The IBSEN III study is a large population-based observational, prospective study designed to address key questions regarding the incidence, treatment, and follow-up of patients with inflammatory bowel disease (IBD). The IBSEN III study has received research funding from South-Eastern Norway Regional Health Authority and the Dam Foundation. Additionally, it has received unrestricted research grants from Ferring Pharmaceuticals, Tillotts, Takeda, and Pfizer.

Contact information:

• Marte Lie Høivik, Prof. at the University of Oslo and Head of the IBD Unit at Oslo University Hospital, email: m.l.hoivik@medisin.uio.no
• Charlotte Lund, PhD candidate at the University of Oslo and a physician at Oslo University Hospital, email: charlotte.lund@studmed.uio.no