Neurodegenerative diseases are now the leading sources of dependence and disability worldwide. Parkinson’s disease (PD) is one of the fastest growing neurodegenerative diseases, affecting almost a million people in Europe. This number may be much higher in reality, as statistics show that around a quarter of people with PD were initially misdiagnosed.

At EPND, we are striving to improve the diagnosis, management and treatment of diseases such as PD, by accelerating the development of biomarkers that can accurately detect and discriminate between different neurodegenerative disorders.

In a special article for Parkinson's Awareness Month, we hear from Andrés Álvarez, President of the Spanish Parkinson’s Federation (Federación Española de Párkinson), as well as four members of the EPND Parkinson’s Advisory Group. The Parkinson’s Advisory Group is composed of 17 people with Parkinson’s disease or Parkinsonism, who are contributing their views as experts with lived experience of disease to inform EPND activities and tasks.

Welcome, Andrés! We are very fortunate to have the Parkinson’s Advisory Group, which allows us to incorporate the patient perspective in all our work. Why is public involvement in Parkinson’s disease research so important?

It is essential that people with Parkinson's disease participate in research initiatives and studies aimed at improving knowledge of the disease they live with. The 2021-2024 Strategic Plan of the Spanish Parkinson’s Federation includes a specific strategy on research that aims to "Improve the dialogue between science, society and the Parkinson's community, where a commitment to research is promoted and where the participation of the informed, educated and committed person adds value".

Public involvement should happen at all stages of research: during the design phase, throughout its development as well as when results are analysed and communicated externally. People with Parkinson’s disease are the experts on living with their condition, and their opinions must be taken into account.

What can patient organisations like the Spanish Parkinson’s Federation add to research?

The participation of patient associations and federations such as ours in research is essential. Together with our 66 member associations from across Spain, we make up the so-called Parkinson's associative movement, a network of organisations that support people with Parkinson's, their families and carers.

These organisations, many of them with more than 25 years of experience, have teams of specialised social and health professionals dedicated to meeting the needs of people with Parkinson's and who, therefore, can add great value to research studies and research teams.

What is the role of the Spanish Parkinson’s Federation (FEP) in EPND?

In EPND, we are collaborating with Alzheimer Europe to support the involvement of people with neurodegenerative disease in all aspects of the project. The FEP has formed a Parkinson's Advisory Group, which is composed of 17 people with Parkinson's or Parkinsonisms. To date, this group has met on two occasions to discuss how to improve participation of people with Parkinson’s in research studies.

In addition, we are contributing to a document developed by Alzheimer Europe that brings together information on dementia, Alzheimer’s and Parkinson’s disease, and aims to reduce stereotypes and myths associated with these diseases. In the case of Parkinson's disease, our aim is to provide research teams with accurate information on what it is really like to live with Parkinson’s disease, and how studies can reflect this reality.

Thankyou, Andrés!

Next, we spoke to four members of the Parkinson’s Advisory Group: Ezequiela, Javier, Marcelino, and Miguel. We asked about their views on research, data sharing, and projects like EPND, which aim to accelerate research on Parkinson’s disease and other neurodegenerative disorders.

Welcome, Ezequiela, Javier, Marcelino and Miguel! Why is Parkinson's disease research important to you?

Marcelino: Because it is a neurodegenerative disease for which up to now there is no known cure, the number of people who have it is increasing, it is the second after Alzheimer's disease and it entails a lot of suffering and social burden. The only way we will find a cure is research.

Ezequiela: Because I am living with the disease but, above all, because without research there is no progress, in any field. And because I would like to find out if there is any possibility of genetic transmission.

How should scientists communicate their research to people with Parkinson's disease?

Javier: The communication must be clear, understandable and the terms used must be precise. The purpose and aims of research should be explained in a truthful, accurate and responsible way. This will help people with Parkinson's trust research, which will encourage collaboration and active participation in research.

Miguel: Communication with people with Parkinson's by researchers must be clear, understandable and friendly; expressed in simple and accessible language for people not trained in the scientific environment, and explaining any scientific terminology necessary to transmit the knowledge accurately. On the other hand, scientists should contextualise the communication to the people to whom it is addressed, taking into account the personal circumstances of each participant, specifying or generalising whatever is necessary for the correct understanding by all audiences. It is also important to clearly explain the ultimate goal of the research process, and to communicate its results, whatever those results may be, until its completion, so that patients continue to feel part of the process.

Why is it important to participate in research?

Javier: It is vital, since it will help enormously in understanding the disease by taking into account the views, experiences and opinions of the person with Parkinson's. Without this piece of the puzzle, researchers will not have a complete understanding of Parkinson’s disease. You cannot be passive and let time pass by. All parties must work together to advance research.

Ezequiela: Because facilitating the work of researchers could translate into beneficial discoveries, in the short or long term, if not for those of us who are participating now, then for future patients.

How does it feel to be part of the EPND Parkinson's Advisory Group?

Javier: I feel happy to be able to actively collaborate by contributing my experiences and opinions to enhance this research, and to help improve the quality of life of other people with Parkinson’s disease.

Miguel: It makes me feel useful, it makes my condition as a person with Parkinson's have another meaning; I am not just one more affected person, but in some way I can join in the fight against this disease. I feel that I am part of something bigger and more important that has a lot of value for the future, which brings more meaning to my illness.

Why are projects like EPND important for people affected by Parkinson's disease?

Ezequiela: Because, as I have heard more than once, it is a disease that is becoming more common and with an earlier onset. We need more research on Parkinson’s, now.

Marcelino: Projects like EPND are important because Parkinson's is a neurodegenerative disease and this project works on the discovery, identification and validation biomarkers in neurodegenerative diseases through the exchange of data and biological samples.

What do you think of data sharing?

Marcelino: My opinion is that it is essential to share data that can give clues about the origin of neurodegenerative diseases. With the comparative study of the data, we can understand the similarities and differences between neurodegenerative diseases, which can provide very relevant information about causes, effects, etc.

Miguel : Data sharing, in a secure and legally-compliant way, is an important element in scientific research. On the one hand, it can save resources in one part of the process, and this saving means that budgets can be reallocated to other parts of the research. At the same time, a multiplicative effect is generated in the knowledge of the disease, because by sharing both the original data to carry out the studies, and the results of the investigations, this exchange of data at scale becomes an accelerator for future research.