Story behind the participant: Peter Ambühl

Many clinical trials are looking for participants. In this new interview series, we tell the stories of people who are participating in one of our studies. Why did they choose to participate? And how do they experience their participation? This time we spoke with Peter Ambühl. Peter is participating in a clinical trial in the Netherlands, at University Medical Centre Utrecht.

Can you tell something about yourself?

‘’My name is Peter Ambühl, I’m from Zurich, Switzerland and I just turned 57. I’m married to Bettina and have a 25 year old daughter. I was diagnosed with ALS in May 2019. I used to have a trading company in medical supplies. We sold this company at the end of 2020. The funny thing is, we sold supplies to bring patients back to moving, so I was already familiar with many mobility aids for ALS patients. I stopped working after we sold the company. I’m now retired, and have a disability pension.

I grew up in a skiing village in Switzerland. My symptoms first started when I was skiing in February 2018. Normally when I ski, I don’t touch the snow. But this time was different. That was the first time I noticed something was wrong. Later I noticed I easily got tired when walking, and the muscles in my leg started to weaken. I went to my personal doctor and was referred to a neurologist. He sent me to the ALS centre in Switzerland, where I received my diagnosis.’’

When did you decide to participate in a clinical trial?

‘’I was first asked to participate in a study in Switzerland. This study required me to be at the study site for three weeks. As this was during the selling period of our company, this was not possible. For most other studies, my progression rate was too slow. Of course, I’m very happy that my progression is slow, but that meant I could not participate in most studies.

Last year I heard from a colleague of Bettina, at the University of Zurich, about a study for a specific gene mutation. To find out if I have this mutation, I did an extensive genetic test. I initiated this on my own, as it is not part of the normal treatment standard in Switzerland. This way I found I have a mutation in the ATXN2 gene.

A short time afterwards, through internet research, I found a study from Biogen and Ionis (pharmaceutical companies, red.) with a medicine for this specific gene mutation. On the clinicaltrials.gov platform I found that University Medical Centre Utrecht is participating in this study.

It was not very easy to get information about the study, as the information that I found was quite complex. Therefore, I discussed it with the ALS centre in Switzerland. I also wrote to Tommy Bunte (physician assistant and research coordinator in Utrecht, red.) to ask if I would be suitable to participate in the study. After that, everything went quite fast.’’

How is your experience participating in the study so far?

Peter and the research team at University Medical Centre Utrecht. From left to right: Karen Vlaardingerbroek, Peter Ambühl, Arianne de Fockert and Tommy Bunte

‘’The possibility that the drug might stop the disease, is a huge motivation of course.  Another positive thing is that we can go to Utrecht. The first few times we took the car, and stopped at different places. This was quite an experience. I celebrated my birthday in Hamburg, for example. We also stayed in the area between the hospital visits a few times, to visit new places.

I don’t see many negative aspects about participating in the study. Just some small things, and you get used to those. For example, we currently go to Utrecht by plane. We have to make some arrangements for this flight, and you have to be very precise with that. For example, I can walk about 40-50 steps, so getting to the plane is no problem. But I cannot make the step upwards to the plane, so a special wheelchair had to be arranged. Everybody at the airport and the service staff is very friendly and helpful, though. The support you get is really great.’’

Peter and his wife are also very positive about the research team in the hospital in Utrecht. ‘’They are very friendly and helpful as well. The information that we receive is always very clear. Also, if you write an email with a question, you get an answer very quickly.’’

How did people around you feel about your decision to participate in the study?

‘’Everyone sees it as a light at the end of the tunnel. It gives hope, and allows you to not only sit back and wait but to actually do something. It helps you, and those around you, to better cope with the situation.’’

Do you have a tip for other patients considering participating in a study?

‘’I think it can help to do some research yourself. In that way, you may be able to get information about studies before your doctor does. Besides, the disease progresses every month, and you may not see your doctor very often. I also think it’s important to participate because you’re helping other patients. It brings the scientific work forward.’’

Participating in a clinical trial

Several clinical trials are looking for participants. You can find an overview of all trials supported by TRICALS on this page (scroll down). If you are interested in a study, please contact one of the participating TRICALS centres that are listed below each study. They can provide you with more information and answer any questions you may have.