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Open science resources for Parkinson’s research

Coronal view of a human brain in Parkinson's disease — the most common movement disorder.Credit: Sherbrooke Connectivity Imaging Lab/Image Source/Getty

The Michael J. Fox Foundation for Parkinson’s Research (MJFF) was founded in 2000 by the renowned actor, nearly ten years after his own diagnosis. The goal: to find a cure for Parkinson’s disease (PD) and improve treatments for people who have the condition. According to the WHO, disability and death rates from PD are increasing faster than for any other neurological disorder. MJFF has so far invested more than US$1.75 billion into global research and open science practices. The organisation provides scientists with resources: funding, data, bio-samples, laboratory tools and training programmes. With a background in pharmacology and neuroscience — and a passion for translational research — Mark Frasier highlights how the foundation is aiming to find a cure and put itself out of business.

Tell me about MJFF’s role in Parkinson’s research.

We accelerate research through funding and resources to hasten discovery, translation and validation of treatments for Parkinson’s. While we provide more funding for Parkinson’s research than any other non-profit in the world, we also offer extensive open science resources to researchers who are studying PD and developing treatments. We provide everything from biosamples to pre-clinical models. Ultimately, we aspire to put ourselves out of business by finding a cure for Parkinson’s disease.

How does MJFF support collaborative research?

We bring Parkinson’s researchers together. MJFF provides the forums and tools for sharing knowledge, methods and findings, to accelerate research. As well as funding, we offer research support through a network of expert advisors, a robust repository of biosamples, and tools to help with study recruitment and retention. We pride ourselves on how much we can offer the research community through our open science resources. Our largest programme is the Parkinson’s Progression Markers Initiative (PPMI). Data from people with and without Parkinson’s are collected by 50 academic centres worldwide. These comprehensive datasets include molecular, genetic and neurological imaging data, together with clinical data and biological samples like spinal fluid, blood and DNA. All data are shared in real time through a web portal, and we encourage the research community to mine these data. We also support a global Parkinson’s genetics programme where the goal is to obtain DNA and genetic information for more than 500,000 people with Parkinson’s with an emphasis on partnering with underrepresented populations.

What lab resources does MJFF provide?

We offer tools to Parkinson’s researchers of every focus and stage of research. For example, MJFF has a catalogue of more than 100 laboratory resources, from antibodies and laboratory reagents to pre-clinical models. We work directly with vendors to develop tools, meaning we can distribute them widely at low cost and give every scientist the chance to use them. This makes research more efficient: results can be compared from lab to lab, and tools are consistent across studies.

What kind of impacts do we see from MJFF?

One of the first antibodies we supported was against LRRK2, a protein kinase associated with the initiation and progression of Parkinson’s. In 2018, we coordinated development of an antibody against a key substrate of LRRK2 — Rab10. This antibody has spawned multiple research projects, and crucially is now part of an assay that measures phosphorylated Rab10 and the associated activity of LRRK2. This assay has been used widely in clinical trials to determine whether drugs are engaging their target correctly. Again, that’s just one of more than 100 lab resources we offer.

What funding and training does MJFF provide?

We have multiple funding mechanisms, including traditional open calls available to all researchers, and a rolling review cycle where we make rapid decisions on applications from industry and industry-academic partnerships. We also have contract-based funding, where we approach specific laboratories with a particular idea. All researchers we fund are required to share their data and publish in open access formats. We’re always working to bring more voices into the conversation. Open science invites more people to join, but we also provide training opportunities, such as our fellowship programme. We support institutions to train physicians in motor disorder care and research over two years, growing the global base of these clinician-scientists.

How does MJFF support clinical research?

Recruitment and retention can create challenges for all kinds of PD research, especially when it comes to bringing together diverse cohorts. We have toolkits available on our website to help shed light on best practices for everything from guiding participants through consent to generating awareness about your study. We also offer our Fox Trial Finder tool to help researchers connect with potential participants. This lists recruitment opportunities from researchers and helps volunteers find studies which they are eligible to join. We also send regular updates to clinicians who sign up for our email updates highlighting trials in which their patients could participate.

For more information on how MJFF could advance your Parkinson’s research, visit: https://www.michaeljfox.org/research-resources/

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