Frequently asked questions and answers

We regularly receive questions from participants and interested parties about the Urimon study and the Stibion Biobank. Below we summarise the most frequently asked questions for you and provide the answer directly below. Perhaps your question is among them. If not, or if something is not entirely clear, please feel free to contact us at info@urimon.nl or the Urimon info line at: 085-0220268. We will be happy to help you.

About the study

What does the study involve?

The Urimon study is a medical scientific study approved by the Medical Ethics Review Committee of the University Medical Centre in Utrecht. It investigates the possibility of developing a disease warning system based on substances in urine and blood samples. With the results of the Urimon study, it may be possible in the future to monitor a person’s health through a periodic urine or blood test and detect serious diseases at an early stage.

Which diseases are included in the study?

The diseases we investigate at in Urimon study are the most common cancers, cardiovascular diseases and neurological diseases such as MS (Multiple Sclerosis), Parkinson’s disease and Alzheimer’s disease.

Will my body material (blood and urine) always be analysed?

If you unexpectedly become ill (cancer, cardiovascular or neurological disease) during the study, your samples will be analysed. Samples from about 7% of people who remain healthy – which is equal to the number of people expected to become ill – will also be analysed. So, in case you remain healthy during the period of participation, chances are high that your samples will not be analysed.

What happens to my blood and urine?

After you hand in your material at the blood collection centre or send it to us via PostNL, it is processed by the people at the laboratory. This is done according to the latest guidelines and strictest standards and stored in coded form in the freezers of the Stibion Biobank.

What does participation involve?

When you take part in the study, we will ask you to submit a urine sample and complete a short questionnaire about your health once every 3 or 4 months during a period of 2 years (i.e. a total of 8 times).

How long will my data and samples be stored?

For the Urimon study, your coded data and body material will be stored for as long as is useful with a maximum of 15 years. It is stored for a maximum of 15 years to allow additional analysis within the scope of the Urimon study. If you also gave permission to the use of your coded data and body material for other studies in the field of health monitoring and early detection of diseases, your coded data and body material will be stored in the Stibion Biobank for as long as necessary. There is no expiry date on this.

What is the duration of the study?

Participation in the study has a duration of 2 years. During that time, we will ask you to submit a urine sample once every 3 or 4 months (so a total of 8 times) and complete a short questionnaire about your health. When these 2 years are over, you can choose to extend your participation in the study.

Advantages and disadvantages

What do I gain from participating?

The main benefit of taking part in this research is not for you as a participant but for the population as a whole if this research does indeed lead to new possibilities for a disease warning system in a few years’ time.

How much time will participating in the study take?

The total time investment of participating in the study is about 2.5 hours in 2 years. This partly depends on the distance someone lives from a participating blood collection centre or a PostNL point.

Is participating in the study free of charge?

Yes, taking part in the Urimon study is free of charge. The cost of processing the material at the laboratory will not be deducted from your deductible.

Is taking part safe?

There are no known risks or side effects from urine collection. To protect your privacy, your data and body material are coded. Your name and other data that can directly identify you will not be visible. Only the key to the code allows data to be traced back to you. The key to the code remains safely stored at the Biobank. The data and body material sent to any other parties involved will only contain the code, but not your name or any other data that could identify you. Reports and publications about the study are also not traceable to you.

What will I receive if I participate in the study?

You will not be paid for participating in this study. The main benefit of participating is for the population as a whole if this research does indeed lead to a disease warning system in diseases such as cancer, cardiovascular or neurological diseases in a few years’ time.

Participating in the study

When can I take part in the study?

All persons with a stable health condition and without any form of cancer, cardiovascular disease or neurological disease aged 45 to 75 years can participate in the study. Persons with a hereditary increased risk of developing certain diseases can participate aged 30 to 75 years. Chronic conditions such as diabetes, COPD or obesity are no reason for exclusion if there is a stable situation.

I would like to participate in the study. What do I need to do?

You can subscribe at https://app.urimon.nl/register. Once you have registered, you will receive an e-mail with more information and 2 consent forms (1 for the Urimon study and 1 for the Stibion Biobank). You can easily fill in these consent forms and sign them digitally.

My GP, pharmacy, patient association and/or medical specialist is not participating in the study. Can I still participate?

Even if your GP, pharmacy, patient association and/or medical specialist does not participate, you can still take part in the study.

Where can I hand in my urine?

If you live near a participating blood collection centre, you can hand in your urine there. To do so, you need to make an appointment. For more information on making an appointment click here. If you do not live close to a participating blood collection centre, you can hand in your urine, in the appropriate returnable box, at a PostNL point near you.

Organisation

What is the Stibion Biobank?

Stibion stands for Stichting Biobank Oost Nederland and is based in Enschede. The objective of the Biobank is to enable and support research into health monitoring and early detection of disease. It is a non-profit foundation and it was set up specifically to enable the Urimon research. Stibion processes and stores your material and data according to the latest guidelines and strictest safety standards, and is supervised by the Biobanks Review Committee (TCBio) of the Utrecht University Medical Centre. If a participant has given permission to do so in their consent form, then other parties (universities, research institutes and companies) can also request samples from the Biobank. These requests will be evaluated on quality and objective, as they may only be used for health monitoring and early detection of disease. Distribution of material and data is always coded and therefore anonymous. Thus, your samples may also help studies other than Urimon to make health monitoring and early detection of disease a reality as soon as possible.

What is Medlon/Unilabs?

Medlon or Unilabs is the laboratory that provides medical diagnostics in Twente. Participants in the Urimon study who live in Twente submit their urine samples to a participating blood collection centre of Medlon/Unilabs. After this, it is processed by Medlon/Unilabs staff and stored in the Stibion Biobank. Participants from Hilversum deliver their samples to the laboratory of the Tergooi Hospital in Hilversum. Participants who do not live near a participating blood collection centre deliver their urine, in the appropriate return box, to a PostNL point. It will then be processed by How Are You Diagnostics’ laboratory.

What is How Are You Diagnostics?

How Are You Diagnostics is a laboratory that provides medical diagnostics nationwide. The urine of Urimon study participants who do not live in Twente or near the Tergooi hospital in Hilversum is processed by How Are You Diagnostics. The urine will then be stored in the Stibion Biobank.

What is You2Yourself?

Enschede-based company You2Yourself (Y2Y) focuses on the development of a “disease warning system” that may allow us to detect serious diseases earlier in the future. Y2Y is paying for the Urimon research and the early warning system Y2Y envisions will detect the onset of disease and indicate exactly which disease is developing. With this information, a doctor can conduct further research in the future and thus prevent a serious disease from being detected too late.