Research

What is research? We hear this question asked often and to be honest, it’s a very complex field. Here is the clearest definition we’ve come across:

‘Research is the process of solving problems and finding facts in an organised way following a process known around the world as the scientific method. To do this, researchers propose theories about a problem or observation and then do experiments to see if their theory was right or wrong.’

To put it simply, it's a process. The process itself is broken down into different groups so we understand what scientific activities may happen and who may be involved in it. Some of the groups fall only into the scientific field and some don't. Here is a list of different research groups that are linked with Parkinson’s:

• User research: collecting data about what individuals may want and need with regards to a product or service in everyday life. For more information about this you can explore the UK Gov website.
• Basic research: lab based investigations looking at tiny molecules and cells to see what they do, how they may change and what benefit they could potentially be once moved into people. To find out more about initiatives encompassing this research format, please read this article published in eLife.
• Translational research: converting what is discovered in the laboratory into things that will directly benefit people. For a more in depth explanation, you can read this journal article about defining translational research.
• Clinical research: research with people to understand health conditions, how they may be changed/improved/cured by means of intervention. For more information do look at our clinical trials page.

Our overarching vision is that people with Parkinson's and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life.

A key part of our mission is to work with other global Parkinson’s organisations to provide the latest information, share good practices, and highlight research that will benefit the whole Parkinson's community. The focus of strategic goal 4 is to support and facilitate collaboration between people with Parkinson’s and those stakeholders involved in clinical research. We are looking to expand this mission to include other forms of research as well.

Our ambitions to support research are:

• to unite the Parkinson’s community in Europe to want to be part of research and know it is their right to do so
• to build communication systems to help people find out more about what research is available and how they can connect with it
• to connect industry and academics with the Parkinson’s community in Europe to ensure better quality future research and make sure that the voices of the community are represented in their work
• to facilitate the research conversation, breaking down the barriers associated with understanding research.

Our research strategy was created through having conversations with our two key audience groups; the first being our member organisations and the wider Parkinson’s community, the second our industry partners and the business field linked with Parkinson’s.

Often research is found to be complicated and inaccessible. To try and start to overcome part of that barrier, we have translated the executive summary of our research strategy into ten languages for you to use, read and share. As some of the language within the document is technical, here is a definition of what we mean when talking about involvement and engagement:

• Involvement – also known as Patient and Public Involvement (PPI). It includes having people affected by the condition meaningfully involved with the inception, design, delivery and dissemination of research. This is an embedded role that affects decision making and research construct, making changes to elements of a research trial in line with suggestions from these individuals.
• Engagement – connecting the voices of people affected by the condition with researchers and research. Engagement is more of an overview and outreach role that can help guide research initiatives and projects rather than making trial specific changes.

The executive summary of our research strategy is available in:

• Czech
• Dutch
• English
• French
• German
• Greek
• Italian
• Portuguese
• Slovenian
• Spanish

The purpose of this strategy is to direct the research ambitions of Parkinson’s Europe. Work packages and activities will be driven from these overarching themes and needs.

The Research Steering Group (RSG) is a group of ten volunteers who keep our research activities focused and relevant. At Parkinson’s Europe we believe in making sure we work with the whole Parkinson’s community and have their voices at the heart of what we do. The group's positions are held for two years, they have monthly one hour meetings and 1-2-1 phone calls with Amelia, our Research Manager, to help make sure all of them are confident in sharing their thoughts. Here is a who’s who of our fantastic RSG volunteers.

Our research partnerships are currently with two organisations designed to help improve research outcomes and activities by working together with other patient groups and organisations. Partnering with each of these supports our research strategy vision and ambitions.

• EUPATI – EUPATI is an independent non-profit foundation. It is a successful programme that provides education and training to increase the capacity and capability of patients and patient representatives to understand and meaningfully contribute to medicines research and development (R&D), and to improve the availability of medical information for patients and other stakeholders. It does so through its Patient Expert Training Programme which has trained more than 250 Patient Experts (EUPATI Fellows), and with 750+ currently enrolled via the EUPATI Open Classroom. In addition, EUPATI provides an open-access multilingual toolbox that has served more than 6.5 million users in 13 languages around the world to date.
• Critical Path for Parkinson’s (CPP) – Creates a collaborative environment for leading experts who come together to accelerate the path to treat those impacted by Parkinson’s. Created by C-Path, CPP fosters consensus and data-driven research among scientists from the bio-pharmaceutical industry, academic institutions, government agencies, and patient advocacy associations. Their mission is to serve as the main international vehicle to develop new, regulatory-endorsed drug development tools based on the most current scientific insights into early Parkinson’s, by combining detailed patient data, expertise in clinical trials from companies and academia, and the unique neutral facilitator role of non-profit organisations.

Everyone has different levels of knowledge and experience with research, from none at all or a short questionnaire to being part of a team who have conducted research. For that reason we wanted to make sure that everyone's questions are recognised and addressed.

FAQs for people with Parkinson’s, partners, caregivers, family members and supporters

• Why is research the way it is?
  • The research structure is designed to make sure whatever is being explored is done so in a rigorous, controlled and safe way. Through history research has not always been so closely controlled and from this we have learned that it needed to be. If you are interested in learning more about the history of research do read about Dr James Lind and also the International Committee of Harmonisation.
• How many things can research solve?
  • Research is at the heart of all human treatments and health care practices that you experience. No new medically approved method of treatment in the last 50 years has become available without research. Sometimes what research looks at does not show a positive effect, however learning does come out of every piece of research, which helps to power and focus future research.
• How can I access research?
  • You can access research in many ways. You can look at academic institution websites, you can speak to your healthcare professional, you can also reach out to organisations like ours to see what is happening and if you can get involved with it. Do not be afraid to ask, the more you ask, the more you will know.
• In what ways can I get involved in research?
  • You can get involved with research from the design and creations point, to being a research participant, to helping with sharing research results. Researchers are now more than ever desperate to understand from you about how to improve their research. If you are interested in becoming a patient expert please have a look at EUPATI, an organisation who specialise in providing training about research.
• Can I take part or participate in research?
  • Yes you absolutely can, everyone can. There are many research trials that are looking for people who don’t have a diagnosis or known health condition. There is something out there for everyone. There are numerous systems where you can look up research you can take part in, for that information please go to our clinical trials page.
• Is it possible for partners, family members and supporters to take part in research?  
  • Yes, actually you are vital to research. There are many research trials that are looking for people who don’t have a diagnosis of Parkinson’s or any known health condition. One example is the PPMI clinical study which is looking to understand what risk factors might be linked to Parkinson’s and therefore need to look at people without Parkinson’s as well.
• Why would someone not be able to take part?
  • With every research trial that is looking to recruit human participants, there is a list of criteria that specify who researchers are looking for – known as inclusion and exclusion criteria. These criteria are created so that the researchers can make sure they are doing research with the participants who are going to potentially benefit from it and also to make sure that the physical safety of the participants is as rigorous as it can be. Unfortunately not all research is for everyone.
• Why should I take part in research?
  • You should take part if research is something you find interesting, feel passionate about or would like access to something new and novel that is not yet currently available through healthcare systems. Only you can decide if research is for you.
• Where do I find the latest research news?
  • For Parkinson’s research news we try to keep up to date with all the most relevant and high quality research on our latest research page. You can also check out our Parkinson’s Life website where they often feature articles about research, as well as have a listen to their podcast.
• What benefits might there be for someone if they got involved in research?
  • There are many benefits people have told us they have experienced while taking part in research. Many people find it boosts their sense of hope and taking control of their condition. Others found it gave them access to and time with experts in the Parkinson’s field that they otherwise would never have met. Although results from research trials are not always significant, the things you will potentially learn about yourself are.
• How do I know research is safe?
  • Research is now very heavily regulated and controlled. There are risks in all research trials, however they will be detailed in the information sheet linked to the trial. Within that information all risks to you will be detailed so you can decide if it's something you feel comfortable with or not. If you are unsure, speak to the researcher or research team or your healthcare professional.
• When I take part in a piece of research, can I leave the research part way through?
  • Yes you can. You absolutely have a right to withdraw from the research whenever you think is right for you. However, before you do make that decision it is best to talk to the research team as depending on what research you are taking part in, there will be specific steps that have to be taken to ensure your safety.
• If I take part in research, will it affect the care I normally receive from my doctor and medical team?
  • Research happens outside of your normal ‘clinical’ care, therefore it should not affect the care you receive from your current medical team. It can however give you an opportunity to speak to medical professionals who have more experience with Parkinson’s than your regular Doctor. You can ask them to share the information they gather with your Doctor so that your medical team has more data about your condition which can help your ongoing care.
• Where is research happening?
  • Research is happening all over the physical world. It's also happening in the virtual world. Many research trials are now online so you can take part or get involved from wherever you are. Other research is happening in hospitals or medical centres, universities, specialist research centres and laboratories all around you. User research often happens whenever you log on to your computer or phone. There are many different types of research as you have read above, and normally the type of research determines where the research takes place.
• How is Parkinson’s research funded?
  • Research is funded in many ways. Some is from grants provided by governments, organisations or public funding bodies. Others are from profits made from the sales of products by pharmaceutical companies. These companies often put money back into the research and development of new products, keeping the learning moving forward.
• Where can I access results from research trials?
  • You can access results from research trials from the research team themselves, especially if you took part in that research. However this may take time to get to you, but don’t be afraid to ask about it. All research is required to be published in journals. A large number of journals are now open access such as sections of the  Movement Disorder Society journal. Otherwise do have a look at our website or if you are someone who likes social media, look for trusted organisations on there such as Parkinson’s News Today on Twitter. However, always double check the origins of your information gathering.

FAQs for researchers and organisations

• What are the best ways for researchers to work with people affected by Parkinson’s?
• Collaboratively is the best way. Asking direct, clear and meaningful questions of your chosen group is a great place to start. If you are interested in learning more about these techniques there is a lot of training now available to help with this. A great place to start is Parkinson’s UK’s guidance for researchers. 
• Can working with people with Parkinson’s increase funding opportunities?
• Absolutely it can and will. Most funders nowadays are looking for evidence of patient and public involvement. Also at approval level the FDA, EMA and MHRA have all made it mandatory for any research trial that is approved to have involvement within their research activities.
• What training opportunities are available to help researchers to improve how they work with people with Parkinson’s when conducting research?
• As mentioned above, you can read the guidance for researchers. However, reaching out to patient organisations or NGOs is a great place to start. They will be able to guide you with their expertise and knowledge to where you can learn the most within the area you are most interested in. We are more than happy to share our expertise with you.

We hope these questions echo your thoughts, if not please do let us know the questions you want answered via info@parkinsonseurope.org.