Get involved in Parkinson's research
Open opportunities and ideas for getting involved in researchOpen opportunities:
Follow the links below to find out more about and get involved in any of our open opportunities:
Explore the toggles below to find out more about getting involved in clinical trials, research funding, media & awareness, regulation, industry & ethics, Rallying and WPC meetings.
Clinical Trials
“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:
- Blogging
- 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
Rallying to the Challenge annual conference
Annual meeting to overcome barriers in clinical trials
Research Funding
“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:
Click here to find out more information
Examples:
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
Example:
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:
Open opportunities: (more information coming soon!)
Evaluate sleep devices
Do you use an app or device to measure or monitor your sleep? We want to hear from you! Which app or device to you use? Which aspects of your sleep does it measure? What do you like about it? What could be improved? Please send your answers and any other thoughts you have on apps and devices to monitor sleep in Parkinson’s to advocacy@cureparkinsons.org.uk
Fox Insight Ambassadors
Five ambassadors needed for participant recruitment to The Michael J Fox Foundation’s comprehensive, international online clinical study, Fox Insight – click here to find out more.
Vision in Parkinson's study
We are looking for people with Parkinson’s who are over 50, diagnosed less than 10 years ago, based within the M25 to take part in an innovative and engaging study at UCL, London. Click here to find out more.
Help to create resources
Creating factsheets about collecting genetic information from people with Parkinson’s. Please e-mail advocacy@cureparkinsons.org.uk for more information.
Parkinson's Family Project
Take part in a UK multi-centre study looking to find new genes that contribute to Parkinson’s disease risk and clinical features. Click here to find out more about getting involved. ClC
NILO-PD Study
The Parkinson Study Group (PSG), under the direction of Tanya Simuni, MD (Northwestern University) is conducting a multi-center, randomized, double-blind, placebo-controlled study of nilotinib in individuals with Parkinson’s disease (PD).
The purpose of the NILO-PD study is to determine if nilotinib is safe, if it can be tolerated by patients with PD and to learn if nilotinib has the possibility of effectively treating PD symptoms. Twenty-five sites will enroll participants into 2 cohorts, approximately 75 in Cohort 1 and 60 in Cohort 2. Cohort 1 will be enrolling first and participants will have moderate to advanced PD. Cohort 2 will enroll after the completion of Cohort 1 and participants will have early PD.
NILO-PD is being conducted under a research grant award from the Michael J. Fox Foundation for Parkinson’s Research.
For more information visit http://nilopd.org/ and NILO-PD blog is live