100 for Parkinson’s case study

100 for Parkinson’s Study Empowers Patients, Builds Research Data Set with uMotif eCOA/ePRO Platform

uMotif eCOA/ePRO platform powers multi-nation decentralized study, helping people with Parkinson’s Disease better understand symptoms and creating a strong data foundation future research.

Wanted: Help patients better understand Parkinson’s Disease symptoms

Parkinson’s Disease cases have doubled in the past 25 years, and disability and death due to the disease are increasing faster than for any other neurological disorder. Parkinson’s affects people in many different ways, so empowering patients to monitor their condition, using smart devices, has the potential help them better understand and take control of their symptoms.

The 100 for Parkinson’s study was created to explore these possibilities. The study was designed to help participants learn more about their own health, better understand how technology can support people living with Parkinson’s, and build a research dataset to drive new insights, including filling knowledge gaps between the twice-a-year visits to neurologists.

uMotif launched the study in collaboration with The Cure Parkinson’s Trust, Parkinson’s UK, the European Parkinson’s Disease Association, Nesta, Boston Scientific, the Cabinet Office, Cisco, East Kent Beautiful Information, Oxford University Innovations Clinical Outcomes, the Liverpool School of Tropical Medicine, the North-West Coast Academic Health Science Network, Sudler and Hennessey, and UCB Pharma.

Challenge: Capture accurate and rich data from patients over multiple months

The study asked people with Parkinson’s and non-Parkinson’s control participants to track their health and enter ePRO data for 100 days using their own smartphones, and to connect their wearable devices, if they had one. To keep patients engaged in capturing rich daily data over an extended period of time, the uMotif platform needed to be easy-to-use, patient-centric, and deliver value to participants.

Why was uMotif so successful?

The uMotif eCOA/ePRO platform empowered participants to engage easily and effectively track symptoms via their smartphones or tablets. It also delivered the flexibility for users to enter data when and where it was most convenient for them. In addition, they could personalize which symptoms and indicators they wished to track, further supporting engagement.

Moreover, the flexible and easy-to-configure uMotif application helped mobilize the study rapidly and delivered the scale required to support a multi-nation research initiative, with thousands of participants entering millions of data points.

“This project changes the dynamics of Parkinson’s research by drawing on information which is as valuable to the individual living with Parkinson’s as it is to the scientists involved in research. The simple daily input mechanism is easy-to-use and can greatly enhance someone’s understanding of the patterns and fluctuations of their own Parkinson’s without the need to leave their homes. This is a critical component of re-establishing quality of life after a Parkinson’s diagnosis. At the same time, the collection of the data about these experiences will be critical in better informing and guiding the research process.”

Tom Isaacs, President and Co-Founder, The Cure Parkinson’s Trust

How it worked

Participants were recruited into the study via the public-facing 100 for Parkinson’s website, hosted by uMotif. Once participants had read information about the study, and completed a simple self-screening questionnaire, participants were invited to join the study by downloading the uMotif iOS or Android smartphone app. 

Registered participants became citizen scientists, using their own devices to gather data on their daily health and wellbeing. Using the uMotif eCOA/ePRO platform, they captured daily symptom data, eDiaries, and clinically validated questionnaires (EQ-5D, NMS-30, PDQ-8), as well as more objective measures through digital neurological games (Tap Test, Stoop Test, One-Back Test).

Using the innovative, patented, and scientifically validated ‘motif’ data-capture interface, participants tracked 10 aspects of their health that were important to them for 100 days. All participants tracked their sleep quality, mood, exercise, diet and stress levels. Each participant also chose five more aspects of their health most important to them, allowing them to personalize the study. The elective symptoms tracked most frequently included balance, water consumption, tremor, and how easy it was to get up in the morning. Participants had the flexibility to record data at a time most convenient to them.

Impact: Engaged participants, rich data set, strong foundation for further research

The interest in 100 for Parkinson’s demonstrated the huge untapped public demand to take part in clinical research. The volume and consistency of data captured proved the uMotif eCOA/ePRO platform’s ability to effectively engage participants in fully virtual decentralized trials. This study underscores how digital technology can effectively transform clinical research to unlock valuable new insights.

Key metrics include: 

– Rapid recruitment of more than 1,500 in a week

– Global interest with participants in more than 60 countries

– Captured more than 2.2 million data points from more than 4,200 participants

– Tracked 1.3 million symptom scores

– Completed more than 7,600 Patient Reported Outcome questionnaires

– Connected data from more than 200,000 data points from participants’ wearable devices

– Continued to capture data from engaged participants after 100-day study period, with one participant continuing to use the app for more than 1,200 days post-study

The study dataset is available for researchers to use without charge. The data has resulted in publications, including assessing the health-related Quality of Life between people with Parkinson’s and those without, based on the EQ-5D questionnaire (DOI access at: 10.3390/ijerph15112538)

“The volume of data collected through 100 For Parkinson’s has surpassed our wildest expectations. To generate this volume of data through traditional clinical research mechanisms would present significant barriers to research taking place. Through the power of participants’ own devices, we were able to overcome geographical barriers that would often exclude many participants from taking part. This is especially true in a condition such as Parkinson’s, where some people may not be able to attend distant research clinics.”

Bruce Hellman, Co-founder and Chief Patient Officer, uMotif

Find out more about how uMotif can help drive unparalleled patient engagement and data capture in your next study