Webinar: Putting patients at the center of Parkinson’s research – how a patient-first approach helps sponsors capture rich eCOA & device data
About the webinar
Patients with Parkinson’s Disease face motor and non-motor challenges in managing their condition and treatment journeys. Today’s clinical and real-world research studies often place further burden on patients – particularly when protocols require objective device data alongside regular subjective ePRO and eDiary data. For too long, studies have been designed without the direct input of patients and a strong focus on how best to support the participant journey.
In this webinar, learn from a person with Parkinson’s Disease – Cathy Molohan – and a leading patient group – Amelia Hursey from Parkinson’s Europe – how a patient-centered approach can reduce burden on patients, trial sites and sponsors. Christine Guo of Actigraph and Bruce Hellman from uMotif will explore how patient-centered technologies lead to higher rates of data capture compliance, completeness while providing researchers with exciting new data types and biomarkers in Parkinson’s.
Presenters
Bruce is uMotif’s entrepreneurial leader and co-founded the company in 2012. He and his team have designed and built the uMotif patient-centric data capture platform powering site-based to fully decentralised clinical, real-world, and post-marketing research. Bruce began his career working in clinical trials at British Biotech before joining the UK Civil Service Fast Stream in the Department for Culture, Media and Sport. Prior to founding uMotif, Bruce was a Management Consultant at Serco and holds an Executive MBA from Imperial College Business School.
Bruce was recognized in the 2019 PharmaVOICE 100 as one of the most innovative entrepreneurs in life sciences and has also been nominated as one of Computer Weekly’s UKtech50 Rising Stars, won the Cisco BIG awards, and was nominated by Real Business magazine as one of the ’30 to watch in mobile’.
Amelia joined Parkinson’s Europe team in January 2022 as Research Manager. She has been working in the field of Neurodegenerative research since 2009.
She previously worked for the NIHR’s DeNDRoN and then at Parkinson’s UK from July 2015 as Research Participation Lead. She was responsible for initiatives to increase research participation for people affected by Parkinson’s, health care professionals and researchers, and created the innovative Parkinson’s UK Take Part Hub and co-produced the Staying Connected toolkit.
Christine Guo leads the clinical and data science team at ActiGraph, responsible for the scientific strategy and services supporting ActiGraph’s leadership in digital medicine. Dr Guo has 15+ years of experience in clinical research and a vision for leveraging technology in clinical trials and practice.
Prior to ActiGraph, Dr Guo was Head of Scientific Innovation at Biogen Healthcare Solutions, leading the clinical development and validation of Biogen’s digital medicine products (Software as Medical device) in multiple sclerosis, neuromuscular and neurodegenerative diseases.
Dr Guo brings unique scientific insights by bridging across clinical and technical disciplines, and is passionate about leveraging data and technology to improve people’s health. She holds a BA in biological sciences from Peking University and PhD in neuroscience from Stanford university.
Cathy is a Parkinson’s advocate, public speaker, member of the Yuvedo Foundation and a former WPC Ambassador.
She was diagnosed with Parkinson’s in her late 30’s and has been using the uMotif app as part of the 100 for Parkinson’s study and has continued to use it ever since to help her manager her condition herself and with her healthcare providers.
Cathy is passionate about patient advocacy and patient-centricity to help find a cure for Parkinson’s and believes that sharing her data through studies, such as these, that she will be able to help improve the quality of life for Parkinson’s patients, and maybe someday help find a cure.
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