With numerous clinical trials interrupted due to the COVID-19 pandemic, The Michael J. Fox Foundation (MJFF) is highlighting online ways that Parkinson’s (PD) patients and others can help to advance research.
People are necessarily spending more time at home, but study participation remains crucial to treatment development. Even before the outbreak, volunteer shortages delayed 85 percent of clinical trials. Thirty percent were unable to even get started.
“It can be an empowering and impactful opportunity for people with and without Parkinson’s disease to help accelerate breakthroughs in treatment,” the MJFF states on its webpage about research participation. “You have the power to help researchers understand how Parkinson’s starts and progresses.”
One research opportunity is the organization’s Fox Trial Finder, an online tool that matches individuals with studies for which they may be eligible. Even if the trial is on hold, patients and others can still express interest. Study coordinators will follow up once recruitment restarts.
Trials can be found through a guided search, or, based on location and keyword, by independent searches. Those interested may also register to receive email alerts about local studies that are or will be recruiting.
Another way to get involved is by joining the organization’s Fox Insight, a digital platform and clinical study aimed at building a large cohort of patients and age-matched control volunteers to help focus treatment priorities, inform their development, and optimize trial design.
This long-term study, which includes patients, families, and caregivers, collects de-identified self-reported data about health experiences. Through an associated genetic sub-study, powered by consumer genetics company 23andMe, eligible individuals can help researchers gain a holistic view of Parkinson’s.
“Technology now allows thousands to contribute vast volumes of data on their lived experience of disease, from symptoms and quality of life to treatment satisfaction and research participation preferences,” MJFF states about Fox Insight, which opened in 2017.
Go here to register and for an informational video.
Elsewhere, the University of Rochester’s neurology department is offering a 20-minute survey that aims to help scientists learn more about Parkinson’s symptoms and everyday issues of importance to patients. The anonymous responses will be used to guide additional studies and to help develop a disease-specific patient-reported outcome measure for clinical trials. The survey may be completed online, on paper, or over the phone.
Bastyr University, in California and Washington state, is leading an online study about complementary and alternative medical care in Parkinson’s. It aims to help scientists learn more about diet, lifestyle and Parkinson’s progression, and the long-term effect of complementary and integrative care on health and life quality.
Patients are asked to complete two online questionnaires every six months for five years. Survey topics cover diagnosis, disease status, sense of balance, daytime sleepiness, walking, dressing, eating, falling, speech, handwriting, pain, vision, sense of smell, comprehension and cognition, sexual dysfunction, dyskinesia, and posture.
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