100 for Parkinson's Study Captures 2.2 Million Data Points, Empowers Patients with uMotif eCOA Platform

Study Summary

uMotif’s eCOA platform powered a multi-nation decentralized study, helping people with Parkinson’s Disease better understand symptoms and creating a strong data foundation future research. The study captured more than 2.2 million data points from more than 4,200 participants.

At-a-glance metrics

• 2.2 million data points captured from more than 4,200 participants
• 1.3 million symptom scores tracked
• 7,600 patient-reported outcome questionnaires completed
• 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

Situation: Patients and providers want to 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 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 this extended period, the eCOA platform needed to be easy-to-use, patient-centric, and deliver value to participants.

Solution: Patient-centric technology and approach

The uMotif eCOA 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 (BYOD) to gather data on their daily health and wellbeing. Using the uMotif eCOA 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).

Data and assessments collected

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.

Results and 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 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

• 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 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

Lessons Learned: What the results mean for researchers

eCOA platforms that put the patient first and are easy to use can effectively keep participants engaged in inputting quality data over extended periods of time, even post-study. The BYOD model expands access to studies and clinical trials, removing geographical barriers that might exclude many participants.

The study was published in the International Journal of Environment Research and Public Health and the dataset is available for researchers to use free-of-charge.

FAQs and Resources

What is 100 for Parkinson’s?

A decentralized study, launched by uMotif with a coalition of research and patient organizations, that asked participants with and without Parkinson’s Disease to track their health for 100 days using the uMotif eCOA solution.

How did participants take part?

Participants self-screened and enrolled through a public study website, then downloaded the uMotif iOS or Android app to track daily symptoms, complete validated questionnaires, and optionally connect a wearable device — all on their own smartphones (BYOD).

What data was collected?

Daily symptom data across 10 self-selected health aspects, eDiaries, clinically validated questionnaires (EQ-5D, NMS-30, PDQ-8), digital neurological game results (Tap Test, Stoop Test, One-Back Test), and connected wearable device data.

What were the outcomes?

More than 4,200 participants from over 60 countries contributed more than 2.2 million data points, including 1.3 million symptom scores and 7,600+ Patient Reported Outcome questionnaires — with some participants continuing to use the app more than 1,200 days after the study ended.

Relevant case studies and solution links

Explore related uMotif resources:

• The Benefits of eCOA — why electronic clinical outcome assessment improves data quality and compliance.
• eCOA Solutions — an overview of uMotif’s configurable eCOA platform.
• Decentralizing Clinical Trials — how sponsors can move data capture out of the clinic without compromising quality.
• More uMotif Case Studies — see how the platform performs across other therapeutic areas.

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

Key Terms Explained

A few specialist terms used throughout this case study, defined for readers new to clinical trial technology:

eCOA: Electronic Clinical Outcome Assessment — any clinical outcome data (symptoms, function, quality of life) captured electronically instead of on paper.

ePRO: Electronic Patient-Reported Outcome — a type of eCOA completed directly by the patient, typically via an app or web form, rather than a clinician.

BYOD: Bring Your Own Device — a study model in which participants use their own smartphone or tablet to enter data, rather than a study-provisioned device.

DCT: Decentralized Clinical Trial — a study conducted partly or fully outside traditional clinic visits, using remote data capture and digital tools.

EQ-5D: A standardized, validated questionnaire used to measure general health-related quality of life.

NMS-30: The Non-Motor Symptoms Questionnaire, a 30-item clinically validated tool for assessing non-movement symptoms of Parkinson’s Disease.

PDQ-8: The Parkinson’s Disease Questionnaire (8-item version), a validated measure of Parkinson’s-specific quality of life.