With over 4,000 participants and millions of data points captured, the study is now the world’s largest of its type in Parkinson’s, capturing more high quality health data from more patients over a longer period of time.
uMotif (leading technology experts in measuring patients' symptoms, outcomes & experience) have been collaborating with the Clinical Outcomes team at Oxford University Innovation on a global study in the area of Parkinson’s Disease (PD). Backed by The Cure Parkinson’s Trust, Parkinson’s UK and 11 other supporting organisations, uMotif developed their smartphone app to track participant’s health. Launched earlier this year the 100 for Parkinson’s project is a public-facing citizen science observational study, with participants tracking their health for 100 days and donating their data for research. Participants include People with Parkinson's, carers and volunteers, who have together captured millions of data points for further research. The purpose of capturing this health data is to share the resulting anonymised ground-breaking dataset with research projects working on treatments for PD. The data will be available from early 2017.
As part of the study, uMotif selected the gold standard quality of life measure for PD, the Parkinson’s Disease Questionnaire (PDQ) developed at Oxford University and now supported by the Clinical Outcomes team at Oxford University Innovation. The PDQ-8 is a short, highly validated, eight question, patient self-complete measure used to assess various aspects of quality of life for people with Parkinson’s. As part of their commitment to supporting research for improving the health of society, the Clinical Outcomes team made the PDQ-8 and their support available free of charge to uMotif and the study.
By developing an app for smartphones and tablet devices, uMotif’s capture of participant data was made far more accessible as participants use their own familiar devices for all responses over the 100 days – a technology approach known as ‘Bring-Your-Own-Device’ (BYOD). 100 for Parkinson’s is the world’s largest ever BYOD study using PDQ-8.
In addition to the PDQ-8 measure, the project captures regular data on participants’ symptoms, experience, wearable devices and medications.
Following the successes of working together on the 100 for Parkinson’s study, and a previous study (a NHS-based Randomised Controlled Trial, the SMART-PD trial), uMotif and Oxford University Innovation are now launching a new health outcomes data capture collaboration for clinical trials. This new collaboration is focussing on new technology-based solutions for gold-standard outcomes measurement in three key sectors :- for industry (pharmaceutical and other medical product companies); academic clinical research and health service provision. The new collaboration creates a unique new technology-based solution, combining uMotif’s innovative health measurement technology alongside Oxford’s highly regarded, robust and validated health measures. The new data capture solution allows industry and academic researchers to capture more data and new data types – outcomes, experience, symptoms, wearables, medications – for clinical trials at lower cost, with faster setup and deployment timescale. Capturing more data more rapidly helps researchers gain new insight, improving the efficiency and effectiveness of trials.
Bruce Hellman, Chief Executive of uMotif said “We’re so used to communicating, shopping, even banking, on our mobile phones and yet we’re only just starting to uncover their potential for our health. The 100 For Parkinson’s study is showing the huge potential to capture high quality health data from patients in real-time, on their own devices. We’re delighted to be working with Oxford University Innovation to ensure the data captured is of gold-standard quality for researchers, clinicians, patients and partners. We look forward to working further with Oxford on new projects in clinical research, Real World Evidence and health services measurement.”
David Churchman, business lead for the Clinical Outcomes team said “we are very proud to play our part in this very worthwhile and innovative global study. We really look forward to hearing about case studies where the arising data has proven valuable to those researching the treatment of PD. We are now working with uMotif to explore further uses of uMotif’s health tracking platform for large (and small) scale assessments in other health conditions including; other neurodegenerative conditions (for example ALS); women’s health (endometriosis); coeliac disease; mental health; dementia and heart failure to name just a few.”