The Michael J. Fox Foundation for Parkinson’s Research (MJFF) launched an educational suite dubbed the “Parkinson’s Clinical Trial Companion.”
The The Michael J. Fox Foundation for Parkinson’s Research (MJFF) launched an educational suite dubbed the “Parkinson’s Clinical Trial Companion.”
The Trial Companion’s goal is to educate patients and their families about the value of participating in clinical trials. It will also provide researchers running Parkinson’s disease clinical trials tools for recruiting and retaining volunteers.
The resource is available at www.michaeljfox.org/PDcompanion
Broken into two parts, the first is the Trial Participant Pack. It’s a 52-page guide that provides basic information to patients and families about how clinical trials are performed, what the different study phases mean, genetic testing, and international research opportunities. It will be translated and made available in English, Spanish, French, German and Italian.
The second part is the Trial Resource Pack, designed for clinical trial teams. The foundation states that it will disseminate “a wealth of information and knowledge, with the participant journey as an organizing principle for optimizing clinical trial design. The manual takes advantage of new technologies that recently have increased patient awareness and enthusiasm for clinical trial participation, made data collection easier and opened new routes to novel discoveries.”
Funding for the Parkinson’s Clinical Trial Companion came from MJFF’s 2017 Parkinson’s Disease Education Consortium. This consortium includes ACADIA Pharmaceuticals, Pfizer, Adamas Pharmaceuticals, Cellular Dynamics International, Lundbeck, Prothena Biosciences and Sunovion Pharmaceuticals.
“The task of recruiting and retaining study participants need not be overwhelming,” said Tanya Simuni, professor of neurology and head of the division of movement disorders at Northwestern University Feinberg School of Medicine, in a statement. “Parkinson’s Clinical Trial Companion offers trial teams a step-by-step, patient-centered approach to support progress in Parkinson’s research through practical resources designed to help streamline participant enrollment and ensure that volunteers continue through to the trial’s end.”
The foundation notes that about a third of clinical trials never launch because they can’t find enough trial participants. This initiative is part of the foundation’s efforts to alleviate that problem. The foundation had funded more than $800 million in research so far, but it has also developed an online tool, the Fox Trial Finder, as a way to improve patient flow to clinical trials. It also promotes Parkinson’s awareness.
On March 22, the foundation granted three research sites $2 million each over two years. One is for J. Timothy Greenamyre with the Pittsburgh Institute for Neurodegenerative Diseases and the University of Pittsburgh. That study will focus on mechanisms by which neurotoxins cause neurodegeneration and how they may interact with known genetic factors leading to Parkinson’s.
A second is to Andrew Singleton, with the National Institute on Aging, part of the National Institute of Health (NIH). This is a Foundational Data Initiative: Mapping Genetic Effects in Parkinson’s, which will grow nerve cells from stem cells and used various genomics, proteomics and metabolomics techniques to map the genetic changes associated with Parkinson’s.
And third, D. James Surmeier of Northwestern University, will receive funding to investigate how cellular aging and related DNA and mitochondrial damage leads to neurodegeneration.
“With Parkinson’s prevalence expected to double by 2040 to nearly 13 million people worldwide, our Foundation believes it is our obligation to continue building on current research momentum to eradicate this disease once and for all,” said Todd Sherer, chief executive officer of MJFF, in a statement. “We are grateful to our supporters, many living with Parkinson’s disease, whose generosity enables us to drive innovation toward breakthroughs through programs like PATH to PD.”
