Innovative research using smart devices and uMotif’s eCOA/ePRO platform yields insight to help patients to take better control of symptoms
By Bruce Hellman
Chief Patient Officer and Co-founder of uMotif
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. In the U.S., someone is diagnosed with Parkinson’s every six minutes—totaling 90,000 people annually in just one country.
April is Parkinson’s Awareness Month, during which the Parkinson’s Foundation engages the community to raise awareness about this disease. Life-changing research into prevention and treatment is making important strides toward improving clinical outcomes. uMotif is honored to have played a role in shaping and leading an innovative study capturing real-world evidence that is designed to empower patients to better understand and take control of their symptoms.
The 100 for Parkinson’s study, conducted via smart devices, 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 real-world data set 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.
The study asked people with Parkinson’s and non-Parkinson’s control participants to track their health and enter Patient Reported Outcome (ePRO) data for 100 days using their own smartphones, and to connect their wearable devices, if they had one.
Using uMotif’s innovative, patented, and scientifically validated ‘motif’ data-capture interface, participants tracked 10 aspects of their health that were important to them for 100 days. The Motif is a flower-like graphical user interface that has been validated by SAFIRA Clinical Research as the first new alternative to text-based instruments for clinical, post-marketing and real-world research. Each petal represents a different question, such as an Outcome Measure, symptom, or eDiary entry. The highly visual and easy-to-use interface is fast and engaging, which leads to higher rates of data capture compliance.
All participants in the 100 for Parkinson’s study used the Motif to track 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, which helped to encourage patient engagement.
The Power of Patient-centric Technology
The uMotif eCOA/ePRO platform empowered participants to engage easily and effectively track symptoms via their smartphones or tablets. The patient-centric technology 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 patient engagement.
The interest in 100 for Parkinson’s demonstrated a huge untapped public demand to take part in clinical research. The volume and consistency of real-world 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.