EARA’s Patient Discovery initiative, aimed at raising awareness about the use of animals in research among patient groups, has had a successful launch in the Netherlands this week with Parkinson’s disease patients.

This project focuses on enhancing participants’ understanding of the different stages of biomedical research and drug development, and the role that animal studies play within these processes.

As part of the wider Parkinson’s Weekend in Nijmegen, EARA, in collaboration with Radboud University Medical Center (Radboudumc) and Radboud University, invited participants to attend the session, Toolkit to understand Parkinson’s disease better, where researchers gave a talk about their research. This session gave an insight into Parkinson’s research using cell models, animal models, toxicology, neurotechnology and imaging techniques.

Participants in this project include those who are living with Parkinson’s Disease, their partners, relatives, or caregivers and any other interested parties.

The next day, participants were welcomed at Radboud University for tours in three different labs. In the cell culture lab, they learned more about the use of primary neuronal cultures from mice, inducing pluripotent stem cells from humans and how to visualise those cells with a 2-photon microscope.

In the biochemical lab, over at Radboudumc, researchers showed how they examine samples that come in from the clinic using chromatography. The last stop was the central animal facility which has different non-invasive scanner set-ups (PET, fMRI) for behavioural studies with rats and mice, with participants getting the chance to see the rodents and their housing facilities.

It is hoped that the initiative will begin to create a network to bridge the gap between research institutions, scientists and patient groups.

Speaking about the event, Janneke den Ouden, a Parkinson’s patient, said: “It feels like a privilege that we, as a group, were able to get a glimpse into Radboud University, Radboudumc and their central animal facility. All locations, but especially the last one, made a significant impression. We learned a lot about chemical analysis, cerebrospinal fluid, connections, and cell adhesion. The more we heard, the clearer it became that we as a group actually know very little.”

Marijn Kuijpers, assistant professor at Radboud University, said that she and her students found giving the tours and interacting with the patients very inspiring. “Our research focuses on very specific molecular processes taking place in specific cells, so most of the time it feels very far from the clinic and the patients. But these two days made clear that nevertheless, they and the patients can still learn a lot from each other.”

One researcher commented: “It was a great experience to see how interested the patients were in our fundamental research and to give fundamental researchers a face. I am sure that this has contributed to decreasing the distance between bench and bed.”

While another said: “It struck me how much the patients already knew about recent scientific advances. This is one of the things that makes that their perspective without a doubt has added value for the scientific discussion. By looking at our research through their eyes, we discover how we can make our work support them and which aspects to prioritise.”

EARA executive director, Kirk Leech, said: “Our aim with the Patient Discovery project is to add the patient voice – something the sector has long sought – to engagement activities to improve public understanding on the use of animals for scientific purposes. The initiative in the Netherlands has been a great start to this valuable initiative.”