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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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Fox Trial Finder Revamped to Help More Enroll in Clinical Trials

Fox Trial Finder

To make it easier for Parkinson’s (PD) patients and healthy volunteers to take part in clinical trials, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) is introducing a redesigned version of its Fox Trial Finder clinical study matching tool.

“At the Foundation, our single urgent goal is to eliminate Parkinson’s disease,” Sohini Chowdhury, MJFF’s deputy CEO, said in a press release. “It will take the efforts of all of us to better connect the millions impacted by the disease worldwide to opportunities that could advance breakthroughs in treatments and ultimately a cure.”

Chowdhury said the new online Fox Trial Finder will help offset the burden of trial recruitment. Due to a lack of volunteers, 85% of clinical studies face delays, and some 30% never get started, she added.

The finder is powered by WCG’s CenterWatch iConnect platform for ease of use. WCG provides services and technologies aimed at improving clinical trial quality and efficiency.

iConnect also lets trial sponsors establish and manage recruitment efforts from one platform, enabling them to gauge each part of each study’s enrollment strategy. The potential result is better predictability and lower outreach costs.

“We are proud to be accelerating research and moving our mission forward to get safer, more effective treatments into the hands of patients living with Parkinson’s disease as efficiently as possible while maintaining the highest quality and ethical research standards,” said Donald A. Deieso, PhD, executive chairman and CEO of WCG. “MJFF’s decision to redesign its new Fox Trial Finder on our iConnect platform will make clinical research much more accessible and easier to navigate for patients and their families.”

Touted as having the world’s most expansive roster of recruiting clinical trials, WCG CenterWatch iConnect is visited monthly by more than 250,000 people seeking information about studies for themselves or others. In addition, the platform falls in the top three of most study-related search results overall.

“MJFF’s Fox Trial Finder has traditionally been one of the gold standards in matching patients to clinical trials,” said Lisa LaLuna, WCG’s senior vice president for patient advocacy. “We are honored to provide MJFF with a more user-friendly version for their Parkinson’s community of patients, families and supporters around the globe.”

Anyone wishing to try the new trial matching tool can go here. At the site, visitors may search for applicable disorders — currently, it reports that 412 Parkinson’s trials are recruiting — and get general information about clinical investigations.

An estimated seven to 10 million individuals globally have Parkinson’s, the most common age-related neurodegenerative disease after Alzheimer’s.

The Foundation funds Parkinson’s research with a goal of finding a cure for Parkinson’s, and better therapies until then.

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Here’s a Primer on Common Parkinson’s Terms and Abbreviations

When you are new to something, it’s common to feel disconnected or out of place — especially when it comes to understanding the language. At church, newcomers may hear words that don’t make any sense. “Churchy” people (including me) tend to throw around big words.

It also occurs with abbreviations. I’ve seen it happen in the Parkinson’s community. It isn’t intentional, but it happens. Someone might read a post with the abbreviation “PWP” and ask, “What is PWP?” Some might even add an apology of sorts: “Sorry, I’m not very smart.”

Big words

Following is a list of common words and definitions that may be unfamiliar to a Parkinson’s newbie:

  • Akinesia: Inability to move spontaneously; loss of voluntary movement.
  • Ataxia: Impaired balance, coordination, and muscle control.
  • Bradykinesia: Slowed movement.
  • Carbidopa-levodopa: Medication used to relieve Parkinson’s disease symptoms.
  • Dopamine: Acts as one of the brain’s messengers to signal movement and maintain balance and coordination.
  • Rigidity: Muscle stiffness and resistance to movement.
  • Postural instability: A term with big words referring to balance issues.
  • Dyskinesia: Abnormal, involuntary movements.
  • Micrographia: Small, cramped, often illegible handwriting.
  • Facial masking: Facial muscles become immobilized, giving the patient a mask-like expression.

Did you know all those words and their meanings when Parkinson’s first arrived at your door? I know I felt out of place when someone would use “dyskinesia” to describe actor Michael J. Fox’s symptoms. It can be awkward when you don’t know.

Abbreviations

The same is true when we throw around abbreviations such as:

  • DBS: Deep brain stimulation.
  • PD: Parkinson’s disease.
  • MDS: Movement disorder specialist, a neurologist who has training specific to Parkinson’s and other movement disorders.
  • PWP: Person (or people) with Parkinson’s disease.

Those may seem second nature to us, but not to someone who was just diagnosed.

The same holds true for the Michael J. Fox Foundation (MJFF), American Parkinson Disease Association (APDA), Parkinson’s Foundation (PF), and more. We tend to abbreviate them, forgetting that the majority of people don’t know what Parkinson’s disease is, let alone the abbreviations of its foundational and organizational names.

Keep it simple

We don’t need to dumb things down, we just need to keep them simple. Starting with the PWP who might be considering DBS as suggested by an MDS and are searching for information from the MJFF to help them understand.

That’s all.

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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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