As a young PhD student, Kim spent four years working hard on her research. She was looking for answers to the question: How do lifestyle and the environment affect IBD? She conducted her research at a time when lifestyle research was still in its infancy. This did not deter Kim. She used samples from the biobank to carry out her research, which ultimately led to her PhD. Through this experience, she came to appreciate just how valuable a biobank can be. She is now its coordinator, with her sights firmly set on the future.
The Dutch IBD Biobank (formerly known as Parelsnoer) began as a nationwide institute directed and funded by the government. All eight university medical centres in the Netherlands participated. They collected biological samples and clinical data, including from people with IBD, and could all apply to use these resources for research. After a while, the funding came to an end. “We thought: it would be such a waste to lose all this, because we have an enormous amount of data and samples here that we can use for so much research.”
The UMCG was one of the hospitals that decided to maintain its biobank, which continues to operate to this day. This means that a wide range of research remains possible. Some researchers investigate which bacteria are present in the gut or which substances in the blood are characteristic of IBD. Others grow organ-like structures that resemble the intestinal tissue of people with IBD. They then use these to investigate how the tissue responds to medication.
Researchers use a wide range of samples for these studies, including blood, tissue and stool. Blood and tissue samples are collected as standard. “I could easily think of 100 studies that could be carried out using a single tube of blood.” Other samples, such as stool, are collected on a project-by-project basis to minimise the burden on patients. “We often collect these from everyone at the same time.” In the future, urine, hair and even breast milk may also be collected.
But how do researchers obtain all these samples? “In principle, everyone who visits our outpatient clinic is asked to take part.” Patients first have a conversation in which they can ask questions. They then complete what is known as a modular consent form. “For example, if you are uncomfortable with genetic research, you can say: ‘I don't want to take part in that part.’ So you can essentially switch individual parts of your participation on or off, depending on what you are happy to take part in.”
When someone comes to the hospital for an intestinal examination or to have blood taken, the doctor asks whether an additional tube of blood or a small piece of tissue can be collected for the biobank. “We ask every time. And you can simply say no.”
The more samples that are collected over a longer period, the more valuable the biobank becomes. “Much of the research focuses on predicting the future. But first, you have to wait for that future to unfold. That is precisely why you need older samples, collected 20 or 30 years ago, to investigate whether they can help explain the situation today.”
Children with IBD have recently also been able to participate. “This means you can follow the course of the disease in a child with, for example, Crohn's disease for many years and build up a picture of how it develops until the child reaches adulthood.”
Isala has also recently become the first non-university hospital to join the biobank. Kim hopes that these data will help researchers understand the experiences of the ‘average’ person with IBD in the future, rather than focusing solely on patients with complex conditions who are referred to the UMCG. “Those patients have already been through a great deal; otherwise, they wouldn't end up here.”
Researchers such as Kim are working towards a future in which treatment decisions are better supported by the available data. “If you asked ten gastroenterologists today which treatment they would choose for a new patient, there is a good chance you would get different answers. And if you asked them why, their answers would almost always be based on personal experience.”
Kim believes a data-driven decision-support tool would be a much better approach. “During a consultation, you could enter details about the patient in front of you. For example, a 40-year-old man with Crohn's disease who smokes and also has rheumatoid arthritis. You could then look at how ten or 100 similar patients have fared.” Developing such a tool requires large amounts of data from IBD patients with a wide range of different characteristics.
Kim hopes that everyone will be willing to contribute, but she also understands why some people say no. “Some people simply feel that taking part is not right for them. In that case, they shouldn't participate, and there is nothing wrong with that.” She adds that some people are already taking part in many other research studies. “I can imagine that you might then think: ‘Not right now.’” Nevertheless, she encourages patients to keep discussing research participation, particularly if they have any doubts. “Just talk to your doctor about it.”
