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Getting involved in an international research project on Parkinson’s

Richard Campbell, Research Support Network volunteer, shares his perspectives on his involvement in a European research project aiming to improve our understanding of Parkinson’s and open the door to new treatments.

Dr Natasha Ratcliffe
Mar 25 · 6 min read
PDMitoQUANT partners at the kick-off meeting. Photo: Prof Jochen Prehn.

PDMitoQUANT is a research project that is trying to unravel some of the possible causes of Parkinson’s. The project is looking at interactions between three things that are known to be involved in the development of Parkinson’s:

  1. damage to mitochondria — the energy producing organelles in cells

PDMitoQUANT is an Innovative Medicines Initiative (IMI) project, a collaborative European research project bringing together pharmaceutical companies, academic and research laboratories and Parkinson’s UK.

Paula Scurfield and I are part of the Parkinson’s UK Research Support Network and have joined the project as patient and public representatives. Our role is to advise on how information about the project is communicated, and how findings are shared with the Parkinson’s community and the public.

I became interested in the research because of its more basic science approach to Parkinson’s. There are many opportunities to take part in research testing new drugs and treatments for Parkinson’s , including on-line surveys. However, this was an opportunity to look in detail at some of the possible causes of the condition in terms of genetics, cell structure and organisation, and the early changes that are happening inside cells even before symptoms become obvious. The research also keeps alive the hope of finding new targets for future drug development.

In November, Paula and I accompanied Professor David Dexter, Deputy Research Director at Parkinson’s UK, to a PDMitoQUANT project meeting. The meeting was held near Tel Aviv in Israel, the base of Teva Pharmaceuticals — one of the commercial partners involved in the project. The purpose of the meeting was to discuss the progress made in the first year of the project. The two days consisted of short reports from various projects groups, followed by questions and discussion on any problems that had arisen and the possible solutions. There was also discussion on plans for the work in Year 2. The general form of the meeting was similar to scientific meetings I attended when I was working, though the technology of ‘slides’ and presentation techniques has advanced considerably in the last twenty years since I retired from academic teaching and research!

The many scientists and partners on the project are all experts in their subjects which included — biochemistry, cell biology, genetics, mitochondrial function, immunology, cell culture techniques, neuroscience (including Parkinson’s), statistics, data handling, ethics, and information dissemination and publication. A formidable gathering of expertise! We were there to give the point of view of people with Parkinson’s and to make sure the scientific experts did not lose sight of the ultimate aim of the research — to improve treatments or even find a cure for Parkinson’s.

We are not experts in the many scientific disciplines represented at the meeting, but we are experts in Parkinson’s!

Richard and Paula presenting at the meeting. Photo: Prof Jochen Prehn.

I suspect that we were the first people with Parkinson’s that some of the experts had met, given that many of them spend their days working in laboratories. We reminded the experts that some of them, or members of their close family, would develop Parkinson’s. We were also able to direct their attention to some of the problems of living with Parkinson’s apart from the obvious and more well known symptoms.

I was very impressed by the size of the collaboration and the complexity of setting up the project — including joining up academic, commercial and research scientists in many different disciplines, some of them not obviously connected with Parkinson’s. The project also requires close monitoring of all the elements so that techniques, materials and cell cultures from different laboratories are developed on time and in the correct format for use by other members of the project. Obviously there is extensive contact between the different laboratories and personnel by e-mail and Skype or similar systems, but this was the first annual face to face meeting.

Some of the investigations use animal models, including mice genetically engineered to develop Parkinson’s-like symptoms. Cell cultures from mice and from humans with and without Parkinson’s are also being developed and used in the research. These techniques raise some ethical questions. There are also legal implications, which I had not considered, such as the movement of the genetically modified animals, cultures and other materials across international borders to ensure research methods are standardised between the different laboratories in the project.

Paula and I interviewed some of the scientists to find out how they became involved, how their work fits into the overall project and what they hope will be discovered. These interviews will be edited and shared in future PDMitoQUANT newsletters.

Outside the formal conference sessions we had interesting conversations with many of the scientists, and they were interested in the idea of volunteers being involved in scientific research. Studies have shown that patient and public involvement in all types of research varies greatly across different countries. Involving people in tasks such as reviewing plain English summaries or helping with patient information literature is becoming increasingly common, but involvement to the extent of travelling to meetings and presenting a paper, even a short one, was a new concept to some of the researchers. It remains to be seen whether the experts will consider the involvement of lay people at all stages in the research to be useful. No-one diluted the scientific content of their presentations to simplify it for us: it was up to us to keep up with the science!

On an unrelated subject we also managed to get a mention to the conference personnel of the Parkinson’s UK Brain Bank, with a reminder that healthy brains were needed for comparison as well as those from people with Parkinson’s. I think I was probably the only person in the conference who is a registered post mortem brain donor. Some participants were uncomfortable with the thought, though they may not have considered the possibility very deeply. Others were very interested and asked me later what was involved in brain donation, and whether it was available in their country.

Richard Campbell, blog author.

I am sure that the project will increase our understanding of Parkinson’s and how it develops. One of the problems, in this and other research projects, is the varied ways in which Parkinson’s presents in different people: some with tremor or movement difficulty, which we know so well, but others whose most prominent symptoms are non-motor, such as fatigue or anxiety. Is it likely that all the different symptoms have a unifying cause ? It may be that there are as many causes as there are different symptoms, but this research of mitochondrial defects at the early stages of the condition may lead to a unifying understanding. If a causal link can be established between dysfunctional mitochondria, alpha-synuclein and brain cell death then it should be possible to identify new targets for drug development aimed at the early stages of the condition. It is clear however that we are not talking about quick results, but rather an improvement in long term understanding leading to new lines of research.


Email us at researchinvolvement@parkinsons.org.uk to find out more.

PDMitoQUANT has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 821522. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and Parkinson’s UK.

The material presented and views expressed here reflect the author’s view and neither IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained herein. https://www.imi.europa.eu/

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

Thanks to Dr Katherine Fletcher

Dr Natasha Ratcliffe

Written by

Research Involvement Manager at Parkinson’s UK

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

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