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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Progressive ‘PD Summer School’ Gearing Up at Bastyr University

PD Summer School

A top progressive researcher at Bastyr University in Washington will lead a unique event — a five-day medical-educational retreat called PD Summer School — aimed at improving the lives of people with Parkinson’s disease.

Touted as the world’s only event of its kind for those living with Parkinson’s, the August 18-23 “school” will be led by Laurie Mischley, ND, MPH, PhD, associate clinical investigator at the university’s Research Institute. Mischley, author of “Natural Therapies for Parkinson’s Disease,” is conducting the ongoing Complementary & Alternative Medicine (CAM) Care in Parkinson’s Disease study at the university. She also developed an outcome measure to assess PD severity.

The PD Summer School, held in collaboration with Bastyr, will include 20 hours of classroom instruction, and individual and group activities, such as meditation, cooking demonstrations, chair massages, and yoga. There will be a field trip to a cannabis dispensary. Participants also will receive “recommendations catered to their unique symptoms, situation and priorities,” based on the results from required lab tests completed prior to the start of classes. Go here for the complete agenda.

Strategies presented will be data driven and supported by peer-reviewed literature. Attendees also can expect information on clinical trial participation, real-world solutions, and patient-centered recommendations.

“The therapies we teach are evidence based, supported by published, peer-reviewed literature,” Mischley said a press release. “They’ll also have a lot of fun, enjoying delicious and nutritious foods, receiving massages and participating in meditation and exercise classes in between lectures and appointments.”

Customized recommendations will be given to all participants based on their individual symptoms, priorities, and lifestyles. Following the program, these suggestions, complete with strategy details and explanations, will be sent to each patient’s physicians.

Participants will get up-to-date information on therapies, environmental toxins, nutrition and diet, and exercise from Parkinson’s experts, including movement disorder specialists, naturopathic physicians, and physical therapists.

Instructors will include John Duda, MD, director of the Parkinson’s Disease Research, Education and Clinical Center; Samantha Evans, naturopathic doctor with a practice in Seattle; physical therapist and PD specialist Nate Coomer; Matthew Brodsky, MD, Oregon Health & Science University; Kimball Magoni, PhD, psychologist; naturopathic doctor Russell B. Mars; naturopathic physician Jade Stefano, a cannabis farmer and processor; and naturopathic doctor Michelle Sexton.

Mischley believes that, much like Alzheimer’s patients in a 2014 study, people with Parkinson’s can benefit from a comprehensive, personalized therapeutic program.

“I don’t think neurodegenerative diseases are nearly as progressive as most people think they are,” she said. “People just need to stop doing the things that are causing the degeneration.”

The last day to register for the program is June 24. For more information, go here. The $4,500 per-patient fee, which does not include lodging, may be partially reimbursed through insurance. Partners or caregivers may attend at a cost of $1,000 per person, not including lodging.

Based in Kenmore, Wash., Bastyr University is a nonprofit private school offering undergraduate, graduate, and doctoral degrees, with a multidisciplinary curriculum in science-based natural medicine.

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Bastyr University Researcher Will Lead Summer School Program for Parkinson’s Patients

summer school

Laurie Mischley, PhD, a researcher at the private, non-profit Bastyr University, is launching the first-ever summer school program for Parkinson’s disease patients.

This August, Mischley will facilitate two medical-educational retreats at Bastyr as part of the new “PD Summer School.”

Until June 15 those interested can apply to one of the five-day itineraries, including therapeutic strategies and tips designed to help individuals with Parkinson’s better navigate issues and concerns related to their disease.

The program is available in two sessions. One session will take place from Aug. 12-17 and another from Aug. 19-24. Both sessions will be held at the Kenmore Campus, in Washington state.

Fees for participating are $4,000 for patients and $500 for partners, excluding costs of accommodation for the week. Included in the registration fee are more than $2,000 worth of laboratory evaluations.

The entire cost of the program can be submitted to insurance companies for reimbursement, as they are equivalent to about 20 hours of patient care plus labs, depending on the insurer and insurance plan.

Topics covered during the sessions include strategies for disease modification, scientific causes behind Parkinson’s and laboratory evaluation of the disease, how to manage motor symptoms, environmental medicines, diet and exercise, among others. All sessions will be lectured by internationally-recognized top Parkinson’s experts.

The PD Summer School was designed using results from a 2014 study, which demonstrated that Alzheimer’s patients’ symptoms could be partially reversed using a comprehensive, personalized therapeutic program based on the underlying development of the disease. Mischley believes that a similar approach also can be applied to Parkinson’s.

“Using a similar approach for PD, people often report a reduction in medication and an improvement in symptoms. I don’t think neurodegenerative diseases are nearly as progressive as most people think they are. People just need to stop doing the things that are causing the degeneration,” she said in a press release.

“PD Summer School patients/students and their caregivers will go home with biologically plausible, real-world action items. The therapies we teach are evidence-based, supported by published, peer-reviewed literature,” Mischley added. “They’ll also have a lot of fun, enjoying delicious and nutritious foods, receiving massages and participating in meditation and exercise classes between lectures and appointments. Family members are invited to attend with their loved ones for a small fee so they can share the experience.”

Participants will be asked to complete personalized lab tests prior to attending the week-long program. Each attendee will then receive recommendations catered to their unique symptoms, context and priorities. These recommendations will be shared with their physicians back home for follow-up.

As well as facilitating the PD Summer School, Mischley is conducting the CAM Care in Parkinson’s Disease study — now recruiting (NCT02194816) — which aims to identify factors (including practices, beliefs, and therapies) associated with improved quality of life and fewer Parkinson’s symptoms.

Catered meals will be provided at no cost at Bastyr’s Dining Commons, with nutrition and cooking demonstrations in the Bastyr Nutrition Kitchen. Information about accommodation is available here.

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Source: Parkinson's News Today