Our Working Groups
We have comprised 6 expert Working Groups across our consortium, each focused on different decisions for the resulting trial.
The consortium unites more than 75 members from a range of key stakeholders, contributing their time and expertise to the success of the project. Members form 6 expert Working Groups, each focused on a different major element of the overall trial.
Our critical work is being driven by our experts with experience, who contribute to all of the Working Groups involved. To design an inclusive trial which is accessible and relevant to the entire Parkinson’s community, we are also actively seeking out and responding to diverse perspectives and needs.
Where is our consortium based?
Our consortium members join us from counties across the UK, representing a range of different geographical areas as well as various academic institutions, NHS Trusts, Clinical Research Networks.
Trial Design Working Group
The Trial Design Working Group is responsible for generation of the master protocol for a multi-arm, multi-stage trial for Parkinson’s disease. They are making decisions to ensure we have the best overall trial design. Such decisions include the eligibility criteria, the randomization process, the trial length, the number of participants we need, when we analyse the data and how we add and remove different treatments.
Meet the Chairs
Professor Roger BarkerProf. Barker is Professor of Clinical Neuroscience at the University of Cambridge and Consultant Neurologist at the Addenbrooke’s Hospital Cambridge. Prof. Barker’s primary research interests include the clinical aspects of Parkinson’s and Huntington’s disease This includes the study of disease heterogeneity using cognitive testing, functional imaging and genetic biomarkers, examining the value of different biomarkers to assess disease onset and progression and evaluating and developing novel therapies for these conditions. Prof. Barker co-leads our Trial Design Working Group in generating a master protocol for the first Multi-arm multi-stage trial assessing neuroprotective treatments for Parkinson’s Disease. |
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Professor James CarpenterProf. Carpenter is Professor of Medical Statistics at the London School of Hygiene & Tropical Medicine and Programme Leader in Methodology at the Medical Research Council (MRC) Clinical Trials Unit. Prof. Carpenter’s research interests include coping with missing data in clinical trials and complex hierarchical models, estimands and sensitivity analysis, meta-analysis and novel trial designs. Prof. Carpenter co-leads our Trial Design Working Group alongside Prof. Roger Barker. |
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Outcome Measures Working Group
Our Outcome Measures Working Group is responsible for selecting the primary, secondary, interim and exploratory outcome measures for the trial. The measures chosen must be clinically relevant, meaningful to patients, meet regulatory requirements and be accessible for use.
Meet the Chair
Professor Anette SchragProfessor Schrag is Professor of Clinical Neurosciences and Consultant Neurologist at University College London. Prof. Schrag’s research has focused on movement disorders, including biomarker studies to improve early diagnosis, clinical trials to reduce symptoms and progression, and the developing tools for the measurement of clinical features. She has pioneered a patient-centred approach in assessing outcomes of clinical trials in Parkinson’s disease and the inclusion and development of patient-oriented outcome measures in other movement disorders. Professor Schrag leads our Outcome Measures Working Group in determining the best primary, secondary and exploratory measures for use in the EJS ACT-PD trial |
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Members of the working group: Rimona Weil, Daniel van Wamelen, Caroline Williams Gray, Michele Hu, Lynn Rochester, Paola Piccini, Henrik Zetterberg, Alastair Noyce, Caroline S. Clarke, Michael Lawton, Matthew Burnell, Ashwani Jha, Brook Huxford, Carroll Siu, Michèle Bartlett
Treatment Selection Working Group
Our Treatment Selection Working Group is responsible for deciding the first round of treatments selected for testing in the trial. They are deciding how and where potential treatments are identified and the best way to score them so that those with the most potential to have an effect are selected.
Meet the Chairs
Professor Tony SchapiraProfessor Tony Schapira is head of the Department of Clinical and Movement Neurosciences at UCL Queen Square Institute of Neurology, and Consultant Neurologist at the National Hospital for Neurology and Neurosurgery and the Royal Free London Hospital. Professor Schapira’s research interests include the molecular, genetic and clinical aspects of Parkinson disease and the development of drugs for slowing its progress. Professor Schapira co-leads our Treatment Selection Working Group with Professor Oliver Bandmann. |
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Professor Oliver BandmannProf. Bandmann is Professor of Movement Disorders Neurology and Honorary Consultant Neurologist at the University of Sheffield. Prof. Bandmann’s research focuses on movement disorders, with a particular interest in working towards disease-modifying therapy for Parkinson’s Disease to slow down progression. Professor Bandmann co-leads our Treatment Selection Working Group which is tasked with developing a robust and transparent process by which to score and shortlist treatments with the greatest neuroprotective potential for entry into the EJS ACT-PD trial. |
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Infrastructure Working Group
Our Infrastructure Working Group are responsible for ensuring that all of the necessary processes and infrastructure are in place across the UK to deliver the trial. They will ensure the trial is inclusive, deliverable and accessible for people with Parkinson’s to participate.
Meet the Chair
Dr Stephen MullinDr Mullin is Associate Professor of Neurology and Honorary Consultant Neurologist at the University of Plymouth, interested in the genetic and clinical stratification of the risk of Parkinson disease. He delivered the first genetically stratified neuroprotective trial in Parkinson’s disease and devised http://pdfrontline.com, an internet based platform for genetic testing in Parkinson‘s. His research now mainly focuses on the use of artificial intelligence to gain mechanistic insights and improve care in Parkinson’s disease. Dr Mullin leads our Infrastructure working group which is tasked with assessing UK infrastructure to deliver complex clinical trials in Parkinson’s disease, as well as processes for data storage, analysis and integration. |
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Members of the working group: Dilan Athauda, Huw Morris, David P. Breen, Christian Lambert, Prasad Korlipara, Monty Silverdale, Kailash P. Bhatia, Alison Yarnall, Raj Khengar, Helen Collins, Fleur Hudson, Gareth Baxendale, Rebecca Croucher, Sandra Bartolomeu Pires, Jennifer Allison, Antony Morgan, Sheila Wonnacott
PPIE Working Group
Our Patient & Public Inclusion & Engagement (PPIE) Working Group are responsible for providing feedback on the decisions and directions of each of the other 5 Working Groups, from their perspective as people with Parkinson’s and Care Partners. Their input is invaluable for ensuring the design remains focused on patient needs and can be successful in its goals.
Meet the Chair
Dr Kevin McFarthingDr Kevin McFarthing is a Parkinson’s Research Advocate, joint editor of the ‘Clinical Trial Highlights’ in the Journal of Parkinson’s Disease and a member of the Research Committee of Cure Parkinson’s Trust. Dr McFarthing collated the Parkinson’s Hope List, a thorough database of potential new therapies in research and clinical stages for Parkinson’s disease. Dr McFarthing leads our PPIE Working Group who input and feedback on all project decisions to ensure that the proposals are informed by, acceptable to and endorsed by patients and their care partners/families. |
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Members of the working group: Antony Morgan, Sheila Wonnacott, Paula Scurfield, Dorothy Salathiel, Sue Whipps, Anna Jewell, Laurel Miller, Eric Deeson, Carroll Siu, Michèle Bartlett, Jodie Forbes, Keith Martin, Kuhan Pushparatnam, Helen Matthews, Amit Batla, Nikul Bakshi, Natasha Ratcliff, Emma Lane, Miriam Parry
Funding & Sustainability Working Group
Our Funding and Sustainability Working Group are responsible for identifying funding opportunities for the project and ensuring the financial stability of the MAMS platform so that it can continue until we find a new treatment. They will put together an overall cost estimate for running the trial, including highlighting the cost-effectiveness of a MAMS design.
Meet the Chairs
Dr Joy DuffenDr Joy Duffen is a Research Associate and experienced Special Projects Manager at Cure Parkinson’s Trust. Dr Duffen’s background lies within business assessment and development, start-ups and investment activities. She is passionate about improving the means by which we are able to bring new Parkinson’s treatments to patients. Dr Duffen co-leads our Funding and Sustainability Working Group in identifying funding streams for the EJS ACT-PD trial and ensuring financial sustainability of the platform. |
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Professor Sonia GandhiProfessor Sonia Gandhi is a Consultant Neurologist and MRC Senior Clinician Scientist from UCL Queen Square Institute of Neurology. Prof Gandhi co-leads the UCL QS Movement Disorders Centre, and leads a research program at The Francis Crick Institute that seeks to understand the molecular mechanisms that underlie familial and sporadic Parkinson’s disease using a combination of biophysics, chemical biology, and stem cell approaches. Prof. Gandhi co-leads our Funding and Sustainability working group alongside Dr Joy Duffen. |
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Members of the working group: Joel Handley, Emily Henderson, Maryanne Graham, Karen Matthews, Vince Greaves, Shona Clegg, David Dexter, Eric Deeson, Laurel Miller