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MJFF Suggests Ways to Help Advance Clinical Trials During Pandemic

online research tools

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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Redefining My Honeymoon Phase as My ‘New Normal’

clinical studies

This December marked the fifth anniversary of my diagnosis with Parkinson’s disease. Technically, I am still in the honeymoon phase — the first three to eight years of the Parkinson’s journey. Life is still pretty normal. Then again, what is normal?

Normal now consists of inconvenient symptoms including tremors, low blood pressure, rigidity, and anxiety. Oh, and lots of medicine. Taking numerous medications daily was never normal but it is now part of my daily routine, along with exercise. Does my evolving normal mean my honeymoon phase is nearing its end? Maybe. Maybe not. I am choosing to redefine my honeymoon phase as my “new normal.” Life is good, but it’s also different. I have moved from newly diagnosed to patiently awaiting a cure.

‘New normal’ puts us in the Cure-for-Parkinson’s Waiting Room. What should we do?

Keep moving and don’t stop!

My goal is to keep others moving alongside me. It’s easy to get comfortable and coast along, but that won’t get the job done in fighting this disease. Staying consistent and living well with Parkinson’s isn’t easy. It’s especially hard to do it alone. One of the most important tactics in this fight is finding others who share the same journey. Parkinson’s warriors and our coaches look out for one another. Parkinson’s comes at us full force and head-on every day. Together, we push back.

You can educate yourself and participate in the search for a cure through clinical studies, especially early in your diagnosis. The Michael J. Fox Foundation’s Fox Trial Finder is a tool that helps match volunteers with available clinical studies. There are two main types of clinical studies — observational studies and clinical trials. Observational studies involve tracking and collecting data for a better understanding of Parkinson’s. Clinical trials test promising drugs and other therapies.

Although many studies are done in a clinical setting, others are not. One long-term research effort is the Fox Insight study. It is completed online and done from home. Some studies are enjoyable. For example, I participated in a study in which I took a series of guitar lessons over six weeks along with others who have Parkinson’s. Researchers examined the effect of the lessons on quality of life, upper motor function, mood, and cognition. Yes, it was fun and we all became friends. However, it was very challenging. More importantly, researchers received valuable data.

There is a study for everyone!

Ultimately, a cure will be found through us — the people facing the disease every day.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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