- Atypical parkinsonisms, rare conditions that affect a significant number of individuals, are often misdiagnosed as Parkinson's
- Expansion of Fox Trial Finder aims to increase engagement in atypical parkinsonism
clinical trials - Research on atypical parkinsonism may help shed light on the biology of Parkinson's and advance therapies across diagnostic lines
NEW YORK -- The Michael J. Fox Foundation for Parkinson's Research (MJFF) today announced the expansion of its clinical research matching tool Fox Trial Finder to include studies and a registration option for atypical parkinsonisms, rare conditions that affect a significant number of individuals. By matching volunteers to clinical trials that need them, Fox Trial Finder speeds progress toward therapeutic breakthroughs, bringing better treatments to patients faster.
"There is much to learn about atypical parkinsonisms and their connections to each other and to Parkinson's disease," said Todd Sherer, PhD, CEO of MJFF. "Expanding Fox Trial Finder to be more inclusive of these conditions will speed trial recruitment and thereby the pace of discovery and drug development for the millions affected."
Atypical Parkinsonism: Addressing Unmet Needs
Atypical parkinsonisms are rare conditions that include corticobasal degeneration, dementia with Lewy bodies, multiple system atrophy and progressive supranuclear palsy. These diseases are characterized by motor symptoms similar to those seen in Parkinson's disease, such as tremor, slowness, rigidity and walking/balance problems. No disease-modifying therapies are effective for any of these conditions; management is symptomatic and supportive.
"Facilitating clinical research on this spectrum of fatal diseases, which strike most often in the prime of life before age 65, is crucial to developing new therapies," said Alex Klein, PhD, vice president of scientific affairs for CurePSP, the leading foundation in atypical parkinsonism diseases. "Research into progressive supranuclear palsy, in particular, is accelerating because it is seen as possibly holding the key to unlocking the secrets of all neurodegeneration, including Parkinson's disease."
Individuals who are interested in participating in atypical parkinsonism research should register on Fox Trial Finder ( www.foxtrialfinder.org ) to be matched with recruiting trials.
Shared Symptoms and Biology: Speeding Research across Diagnostic Lines
In addition to shared symptoms, some atypical parkinsonism conditions also show similar pathology to Parkinson's disease (PD). As in PD, abnormal accumulation of the protein alpha-synuclein is also characteristic of dementia with Lewy bodies and multiple system atrophy. Researchers are hopeful that the overlap in symptoms and biology between Parkinson's and associated conditions means that research into one condition may help uncover breakthroughs that cross diagnostic lines.
Fox Trial Finder first launched in 2011 to help solve the recruitment challenge in Parkinson's research, and, to date, has registered more than 57,000 volunteers. The expansion of Fox Trial Finder to include studies on atypical parkinsonisms can help accelerate enrollment in these trials and bring new therapies to patients faster.
How It Works: A Resource for Patients and Researchers Alike
Fox Trial Finder volunteers fill out a simple, secure registration form with information such as geographic location and medical history. The site then compares this information against its database of parkinsonism clinical studies and returns a short list of the best potential matches. The volunteer reviews these matches and can use a built-in messaging function to connect with trial teams. Volunteers receive email notifications when new trials launch that need them — effortlessly staying up to date on their best trial matches. Participants' privacy is protected by state-of-the-art security protocols; personal identifiers remain private unless and until volunteers proactively choose to share this information with a trial team.
Fox Trial Finder is also a resource for trial teams actively seeking participants for their studies. Registered trial team members can review de-identified profiles of eligible individuals in their area. They can also reach out to potential participants directly, through the site's built-in, anonymous messaging system, to explore the qualifications and appropriateness of the individual for their trial. To be posted to the site, all studies must have obtained ethical approval.
By matching volunteers to the clinical trials that need them, Fox Trial Finder speeds progress toward therapeutic breakthroughs, bringing better treatments to patients faster. Site content is available in English, French, German, Italian and Spanish.
Visit www.foxtrialfinder.org to learn more about how you can get involved. If you are already a Fox Trial Finder user, log on to ensure your profile is up to date.
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About The Michael J. Fox Foundation
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $600 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders, increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder, promotes Parkinson's awareness through high-profile advocacy, events and outreach, and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us on the Web , Facebook , Twitter , and LinkedIn .