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The partnership is funded by the UK Advanced Research and Invention Agency (ARIA), and supported by the non-profit initiative, the James Lind Alliance. Since 2004, Priority Setting Partnerships have successfully identified research priorities for over 165 conditions and/or therapies. This has helped to inform funding priorities, ensured more time is spent on high priority research activities, and enabled the patient voice to directly influence research agendas.
We will form a Steering Group, bringing together people with motor neurone disease, stroke, spinal cord injury, their carers, clinicians, and academics. They agree on the scope of the partnership, what will happen and when, and who else to work with in order to reach as wide an audience as possible.
We will ask people with motor impairments, carers, clinicians, and the wider BCI community to tell us what questions they think research should answer.
We will collect all the questions and sort them into themes. We will also look to see whether any of the questions have been answered by research already.
We will ask people with motor impairments, carers, clinicians, and the wider BCI community to look at the long list of questions and choose their top 10. From this, we can develop a shortlist of questions.
We will hold a workshop, involving all stakeholders, to look at the shortlist of questions and come to a consensus on the final Top 10.
An implanted BCI is a device that interfaces with the central nervous system to restore lost motor and/or sensory capabilities for people living with motor impairments (e.g., limb weakness, amputation, or speech impairments).
Note: This definition of BCI was adapted from the existing US Food and Drug Administration definition, to limit the scope of the Priority Setting Partnership.
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Work in progress... The partnership is currently working to develop the consensus list of Top 10 research priorities.
Mr Akram is a consultant neurosurgeon at the National Hospital for Neurology and Neurosurgery (UCLH) and the Unit of Functional Neurosurgery (UCL) in Queen Square. Most of his practice involves neuromodulation through implanted brain electrodes or lesions. He also runs clinical trials involving BCI devices.
Indivdual with lived experience of stroke.
Family member/carer of an individual with lived experience.
Dr Luke Bashford specialises in human Neuroscience and Neurotechnology. Luke leads academic clinical trials for human implanted Brain-Computer Interfaces and other implanted neurotechnologies in the UK and USA. His research group uses the recording and stimulation capabilities of these devices to investigate the neural mechanisms underlying human cognitive and sensorimotor function for basic science and clinical translation for neurological disorders. In the broader community, he sits on national and international committees and consortia for brain-computer interfaces such as the International BCI Society and iBCI-CC. He works directly with PPIE partners and advises government, industry and third sector organisations. Luke co-leads the National Consortium for Neurotechnology Regulation, a UK Centre of Excellence in Regulatory Science and Innovation.
Ian became tetraplegic following a diving accident in 2010, and later restored movement to a paralyzed limb using BCI neuroprosthetic. He founded the BCI Pioneers Coalition, leads the North American Spinal Cord Injury Consortium, and advocates for spinal cord injury research. His work amplifies lived experiences of people with disabilities
Qualified and practicing Speech and Language Therapist (SLT) and Research Fellow at UCL's Global Disability Innovation Hub (GDI Hub), and co-Director of GDI Hub's newly launched Centre for Digital Language Inclusion. Principal SLT with the MND Association, the leading non-profit/charity for people living with motor neurone disease (MND) in the UK.
To be completed.
Dr Esmee Dohle is an academic clinician training at Oxford University Hospitals. She has an active interest in assistive technology to improve the lives of patients with motor impairments. Through research at the University of Oxford, University of Cambridge and University Medical Center Utrecht, she has contributed to ongoing research in the field of implantable brain-computer interfaces. She is an active member of the implantable brain-computer interface collaborative community (iBCI-cc), which aims to bring together individuals with lived experience of motor impairments, clinicians, engineers and researchers to advance the iBCI field.
I am Jen Horder who had a stroke nearly 5 years ago leaving me with aphasia and apraxia and with very limited use of my right arm and hand. I am now driving again, cycling with friends, I meet with various Stroke support groups locally and have taken part in private speech therapy.
Hugo is a neurosurgery registrar at the National Hospital for Neurology and Neurosurgery, Queen Square, and currently a Doctoral Clinical Fellow at UCL/The Francis Crick Institute where his PhD is in Neuroscience and Neurotechnology. His research focuses on using novel electrodes (Neuropixels) to understand how individual neurons function in the human brain in different disease states.
Individual with lived experience of motor neuron disease.
In August 2021 I was diagnosed with MND/ALS initially with speech symptoms. Later the disease has progressed to my limbs, but I'm still here. My employer Bloomberg and my team have been amazing and I'm still working. I work as a software developer and have keen interest in technology relaying on it more for life. I have a very supportive wife and three grown up kids.
I am the mother of Jen Horder who had a stroke nearly 5 years ago, leaving her with aphasia and apraxia and with very limited use of the right arm and hand. Jen is now driving herself, cycles with friends, meets with various Stroke support groups in her area and has taken part in private speech therapy.
Dr. Abbey Sawyer is a Postdoctoral Research Fellow at the Abilities Research Center, Icahn School of Medicine at Mount Sinai in New York. With expertise in neurological research and clinical training as a physiotherapist in Australia, she focuses on advancing brain-computer interfaces (BCIs) in clinical trials and developing novel outcome measures. Her goal is to enhance independence and improve outcome assessment for individuals with ALS and severe neuromuscular conditions.
Professor of Clinical Neurology and Honorary Consultant Neurologist at the Stroke Research Centre, UCL Institute of Neurology, Queen Square, and the National Hospital for Neurology and Neurosurgery (NHNN), University College Hospitals (UCH) NHS Foundation Trust. He trained in medicine at Guy's hospital and in neurology at Kings College Hospital, St Thomas' hospital and the National hospital, Queen Square. Professor Werring contributes to delivering hyperacute and acute stroke care, and runs a specialist clinical service and research program in intracerebral haemorrhage and cerebral small vessel disease. He is Head of the Research Department of Brain Repair and Rehabilitation at the Institute of Neurology, Chair of the Association of British Neurologists Stroke Advisory Group, Stroke Specialty Lead for the NIHR North Thames Clinical Research Network, Expert Advisor to the NICE centre for guidelines, and on the Editorial Boards of the European Journal of Neurology, European Stroke Journal, and Practical Neurology. David was a Visiting Fellow at Clare Hall, University of Cambridge in 2023, and is now a Clare Hall Life Member. David is Past-Chair of the UK Stroke Forum, the largest multidisciplinary event for stroke care professionals in the UK, and is President of the British Association of Stroke Physicians, 2024-2026. He was appointed as an NIHR Senior Investigator in 2024.
Dr Jamie Brannigan is a clinician scientist who trained at the University of Cambridge, where he also completed an undergraduate degree in neuroscience. He is currently a clinician scientist at Oxford University. His primary research interests are the clinical translation of implantable brain-computer interfaces, and the development of novel endovascular approaches to BCI. Jamie has several years of BCI experience within both academia and industry. In addition to his role at Oxford, he holds an honorary research fellowship at UCL, collaborating on studies aimed at assessing the clinical needs and patient preferences for implantable BCI devices.
Consultant neurosurgeon at the National Hospital for Neurology and Neurosurgery (NHNN). His research interests are in the application of new technologies to improve patient outcomes. Alongside his clinical practice he works with the Sensory Circuits and Neurotechnology laboratory at the Francis Crick Institute on novel neural interfaces and is Chief or Principal Investigator on several clinical trials.
To be completed.