How can I get involved in research?Ideas and resources on ways to get involved in Parkinson's research
Explore the links below to find out about clinical trials, research funding, media and awareness, regulation, industry & ethics, Rallying to the Challenge and WPC meetings.
“The only way we can develop new treatments is to ensure rigorous testing in clinical trials.”
45 per cent of all clinical trials are delayed because of difficulties enrolling participants. Reasons for this include research not being offered, the relevance of the research not being clear, and misconceptions of what is involved.
If we are to develop potential cures for Parkinson’s, this needs to change. Not all studies are interventional trials. Clinical studies fall into the following main categories:
- Trials of new devices or scales to better measure Parkinson’s
- Trials of new devices or tools to manage different symptoms
- Longitudinal studies that follow you/your Parkinson’s over a number of years and provide insights into best treatment and the nature of the disease
- Market research studies to understand the impact of Parkinson’s
- Trials that may help develop diagnostics e.g. eye scanning or providing a blood sample
- Trials of genetic data sets (requiring provision of genetic samples)
- Trials of new therapeutic treatments – these are interventional: Disease modifying, Symptomatic
However, there are so many things that we/you can do to help:
- Supporting a clinical trial steering committee as a lay representative
- Supporting a clinical trial team with their patient communication strategy and editing patient information leaflets and trial update newsletters
- Supporting a clinical trial team in identifying what outcome measures to use
- Supporting a clinical trial team in the design of the trial and the assessments process
- Volunteering to take part in a clinical study
Media and Awareness
“One of the greatest things about Coastin’ was that PR for Tom meant PR for Parkinson’s. While the walk continued they were one and the same. I heard Q’s voice in my head, “You’re a media tart.” Tom Isaacs
Ways of communicating:
- Social media to motivate people to take part and take action
- Social media to link like minded individuals
- Social media to spread surveys/calls to action
- Social media to send simple key messages
Ways to take part:
- Completing surveys
- Writing reports from meetings you attend
- Interviewing with Press, TV and Radio about the need for research into a cure
- Commentaries on issues around the agreed advocacy theme
- Films / interviews with researchers “How can we help you?”
Rallying to the Challenge
Annual meeting to overcome barriers in clinical trials
“We must recognise that although money is crucial to enable progress, teamwork is the only thing that can realise it.” PwP can support funding by working with researchers to leverage funds from third parties for Parkinson’s research/curative projects. The voice of PwP adds credibility and clarifies the need for and the relevance of the project. Involving people with Parkinson’s in funding pitches provides context and ensures the relevance to the wider Parkinson’s community. Many government funders insist that people with Parkinson’s are included in applications and we need to ensure that these contributions are valuable to all parties. This is called patient and public involvement:
In August 2017 CPT hosted a meeting for eight Advocates to help shape a new trial for Exenatide. The group debated outcomes and measures, recruitment issues, the duration of the placebo arm biological samples to be collected and off assessments, providing valuable insights.
Regulation, Industry and Ethics
“Patients can engage with regulators to make the case for fast tracking therapies which have particular potential and ensuring that the payer understands the real impact of new treatments on quality of life.” Tom Isaacs
We need to encourage pharmaceutical companies and researchers working in the field of Parkinson’s to call on PwP’s to explain and describe real therapeutic needs rather than those perceived by others. This should be an on going relationship throughout the development process.
Formal or informal gatherings between academic scientists, pharma representatives, PwPs where stakeholders could provide an opportunity for PwP’s to describe what PD is like, helping to promote the needs of PwPs.
When developing novel or repurposed drugs, we must ensure that industry hears the patient voice, including the anecdotal experiences of those on the trials. This is particularly important as the outcome measures are so imprecise. PwP hat have not been participants can facilitate this dialogue by helping to write a survey to capture their experiences and then communicating the findings both to industry and to the participants.
Engaging with regulators to make the case for fast tracking therapies which have particular potential and ensuring that the payer understands the real impact on quality of life and the benefit of the new treatment and how it relates to existing medication options. Regulators also need to take into consideration that response to medication may be different in different people.
- Identify all the relevant groups and panels where advocacy can influence change
- Lobby to seek PwP representation on these
- Ask Advocates to report back so others can learn from process
David Murray, an advocate from Wales has represented The Cure Parkinson’s Trust with the Neurological Alliance in Wales for the last 5 years. David has also influenced research bids with Cardiff University.
World Parkinson's Conference
The next World Parkinson’s Coalition will take place in June 2019 in Kyoto, Japan. Follow the link below to read more about the conference and find details about attending: