Transforming the Objective Real-world measUrement of Symptoms (TORUS)
Lead Research Organisation:
University of Bristol
Department Name: Electrical and Electronic Engineering
Abstract
The holy grail of a cure for Parkinson's disease has been held back for decades by the extreme difficulty of measuring whether proposed new drugs actually improve the patient's symptoms and daily life. The TORUS research programme aims to solve that problem through a novel platform of sensing technologies for use in patients' own homes along with an advanced data fusion and machine learning pipeline that measures changes in specific mobility-related behaviours over weeks and months.
Neurological disorders are the single largest cause of disability - in the UK alone there are 150,000 people with Parkinson's disease, the fastest-growing neurological condition. Parkinson's disease is incurable, and symptoms worsen over time, severely reducing quality of life and creating heavy burdens on the patient's family. The cost to the NHS each year is £375M, with families and social services contributing a further £877M (Centre for Health & Social Care Research, 2017). The number of people with Parkinson's disease in the UK is expected to nearly double by 2040.
To get a new drug to market, pharmaceutical (pharma) companies need to evidence by a clinical trial whether the drug improves symptoms such as freezing when walking, tremor and the ability to undertake daily tasks such as standing up from sitting or moving between rooms. Currently, to gather this evidence, each patient in the trial must travel to hospital to be observed performing standardised tests by a clinician. However, these (at most) monthly "snapshot" samples of symptoms are a poor representation of the hour-by-hour variation of the patient's true symptoms.
The vision of TORUS is therefore to create the capability to autonomously, continuously and objectively measure symptoms of illness (mobility-related activities of daily living) many times every day during the clinical trial of a new drug, in the patient's own home and for months at a time
TORUS will achieve this goal by using a wrist-worn wearable integrated synergistically with AI-enabled cameras. The data from the wearable and cameras is fused to give metrics of the quality of mobility-related activities. The programme concluses with a clinical proof of concept.
Neurological disorders are the single largest cause of disability - in the UK alone there are 150,000 people with Parkinson's disease, the fastest-growing neurological condition. Parkinson's disease is incurable, and symptoms worsen over time, severely reducing quality of life and creating heavy burdens on the patient's family. The cost to the NHS each year is £375M, with families and social services contributing a further £877M (Centre for Health & Social Care Research, 2017). The number of people with Parkinson's disease in the UK is expected to nearly double by 2040.
To get a new drug to market, pharmaceutical (pharma) companies need to evidence by a clinical trial whether the drug improves symptoms such as freezing when walking, tremor and the ability to undertake daily tasks such as standing up from sitting or moving between rooms. Currently, to gather this evidence, each patient in the trial must travel to hospital to be observed performing standardised tests by a clinician. However, these (at most) monthly "snapshot" samples of symptoms are a poor representation of the hour-by-hour variation of the patient's true symptoms.
The vision of TORUS is therefore to create the capability to autonomously, continuously and objectively measure symptoms of illness (mobility-related activities of daily living) many times every day during the clinical trial of a new drug, in the patient's own home and for months at a time
TORUS will achieve this goal by using a wrist-worn wearable integrated synergistically with AI-enabled cameras. The data from the wearable and cameras is fused to give metrics of the quality of mobility-related activities. The programme concluses with a clinical proof of concept.
Organisations
- University of Bristol (Lead Research Organisation)
- Parkinson's UK (Project Partner)
- Takeda Pharmaceutical International Co, (Project Partner)
- Bristol Health Partners (Project Partner)
- The Cure Parkinson's Trust (Project Partner)
- Lindus Health (Project Partner)
- Sanofi (International) (Project Partner)
- APARITO (Project Partner)
- Pfizer (Project Partner)
- Biogen (Project Partner)
Publications
Alcock L
(2025)
Gait, Balance, and Mobility Analysis
Mc Ardle R
(2025)
Validation of an algorithm for detecting turning in people with cognitive impairment, considering dementia disease subtype
in Gait & Posture
Tonkin, E. L.
(2024)
Challenges in Data Preservation for AI and ML Systems
| Description | Contributed to the ACM EUR TPC Response to Guidelines 01/25 on Pseudonymisation |
| Geographic Reach | Europe |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | Characterising and validating turn strategies in the real-world in people with Parkinson's disease |
| Amount | £89,288 (GBP) |
| Organisation | National Institute for Health and Care Research |
| Department | NIHR Newcastle Biomedical Research Centre |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 06/2024 |
| Description | BBC Radio Bristol |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Went on BBC Radio Bristol (John Darvall show) with chair of the Patient Council to discuss the TORUS project generally, and put out an advert for recruiting people to the Patient Council/TORUS mailing list. Spoke about the project to John. Advertise the project and get new sign ups to the mailing list/Patient Council. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Chaired workshop at ARDUOUS |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | Chaired 8th International Workshop on Annotation of User Data for Ubiquitous Systems (ARDUOUS) at the Informatik Festival. For this year, the ARDUOUS workshop focused on emerging regulatory requirements for AI systems, such as the EU AI Act, and on documenting and preserving relevant information about AI systems, since these are broadly required by many nations' emerging legislation in this area. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Co-chaired workshop on data preservation in ML |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Co-chaired a workshop on data preservation in applied machine learning, including participating on a panel. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Co-led workshop at IEEE eScience conference |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Co-led a workshop at the IEEE eScience conference in September 2024 on Impact from eScience in Osaka Japan. Sharing experiences of specific case studies and programs that have been designed to increase impact outside of academia. The workshop will include presentations and discussion on topics including case studies and reflections on: Collaborative Impact: Explore case studies where partnerships between academia, private industry, and government entities are driving positive change, sustainable growth and societal benefits using eScience. Delve into the strategies and frameworks that enable successful and sustainable collaboration and impact. Entrepreneurial Impact: Discover the transformative power of entrepreneurial activities, including the creation of spin-offs, in bringing data science innovations to market. Learn from the journeys of those who have navigated the path from concept to impact, highlighting the challenges and triumphs encountered along the way. Foundations for Impact: Unpack the design and implementation of programs, methods, centres, and organisations dedicated to maximising the impact of eScience. From theoretical underpinnings to practical applications, gain insights into building and scaling efforts that deliver tangible outcomes and measurable impact. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Coverage in Nonesuch magazine |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | An article talking about the project in the UoB nonesuch alumni magazine. Page 3 of the Summer 2024 edition. Discussed the general aims of the project and is to raise awareness about research at the university and promote specific research studies (including TORUS). |
| Year(s) Of Engagement Activity | 2024 |
| Description | EU-Singapore Dialogue on Digital Trust and Safe AI (Keynote) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Nanyang Technological University (NTU), Singapore hosted the inaugural NTU Singapore Europe Dialogue on Digital Trust & Safe AI. It brought together leading research institutes, government agencies, and companies to strengthen ties and deepen research collaboration between Singapore and Europe with the aim of advancing digital trust and Safe AI in the region and beyond. This was a keynote presentation given. |
| Year(s) Of Engagement Activity | 2024 |
| Description | GW4 Early Career Neuroscientists' Day poster presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Elaine Czech presented the poster which was about the design of engagement activities between people with lived experience of Parkinson's (members of the Patient Council) and TORUS early-career researchers. Elaine was able to speak to the people presenting other posters, and was approached by another interested researcher who has since started work on a project linked with TORUS. Increasing Awareness of the engagement work TORUS is doing within the Neuroscience Early Career Researcher community in Bristol. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Lecture on "transforming healthcare" to Newcastle Explore Lifelong Learning Group |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Lecture on "transforming healthcare" to Newcastle Explore Lifelong Learning Group |
| Year(s) Of Engagement Activity | 2024 |
| Description | Lectures for UoB Digital Health |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Lectures delivered for Digital Health (primarily postgrad/ PhD students) on the topics of Data Ethics and the GDPR, Data Management and DMPs, and AI Ethics. This was to support their studies and project work. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Newcastle University-Nanyang Technical University workshop on Digital Healthcare & AI, Singapore |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Newcastle University in Singapore and the Digital Trust Centre (DTC) at Nanyang Technological University (NTU) hosted a pivotal event, the Dialogue on Digital Trust in AI for Healthcare. This gathering brought together a diverse group of experts, innovators, and thought leaders to delve into the critical role of trust in integrating AI technologies within the healthcare sector. The talk was around transforming healthcare through AI, in which TORUS was discussed. For knowledge exchange and networking. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Patient Council |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Recurring activity, first meeting was July 2024 (3 per year). TORUS Patient Council is a patient advisory group made up of people with lived experienced of Parkinsons (people with PD and carers/next of kin etc.). Members are based in South West or North East and meetings are held in hybrid format. Topics covered vary, but generally are project updates and then open discussions around various topics. The group also provide advice and guidance outside of the formal meetings. |
| Year(s) Of Engagement Activity | 2024,2025 |
| Description | Patient and researcher engagement activities |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Two engagement afternoons, linking people from the Patient Council with TORUS early career researchers. An informal opportunity for everyone to get to know one another, to enrich the research and also give Patient Council members a better understanding of the TORUS research. Researchers gave presentations, had a lunch to mingle, then a space in the afternoon for general chatting. Helped organise and oversee the running of the event An informal opportunity for everyone to get to know one another, to enrich the research and also give Patient Council members a better understanding of the TORUS research. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Presentation on "Trends in data science and AI" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Industry/Business |
| Results and Impact | Presentation on "Trends in data science and AI" to the Federation of Small Businesses North East |
| Year(s) Of Engagement Activity | 2024 |