“The answer to Parkinson’s disease is bigger than any single individual. The answer is truly in all of us, working together. International collaboration is essential for speeding a cure for the five million Parkinson’s patients worldwide.”
-Michael J. Fox
Gian Luigi Lenzi (GLL): The EAN – European Academy of Neurology is the platform by excellence for all European neurologists. Can you briefly outline the mission of The Michael J. Fox Foundation to the neurologists and Neuropenews readers?
Sohini Chowdhury (SC): The Michael J. Fox Foundation for Parkinson’s Research (MJFF) is dedicated to finding a cure for Parkinson’s disease (PD) through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with PD today. Since our founding in 2000, we have funded over $450 million in PD research across 1,300 projects. We currently have 450 active grants in our portfolio, with 30% of these projects based outside the United States. We focus particularly on funding translational and clinical research, with the goal of de-risking the PD field for larger funders, such as industry or venture capital.
GLL: Parkinson’s disease has a huge impact both on the patients affected by it and on their loved ones. How does the Foundation address this issue?
SC: Patients and their caregivers are at the core of the MJFF mission. We fund the most promising research that will lead us to a disease-modifying therapy or that addresses symptoms of PD and the side effects of current PD treatments such as dyskinesias.
We help patients and their families find ways to directly engage in PD research. MJFF’s Web-based clinical trial matching tool Fox Trial Finder enables people, with Parkinson’s and without, to create a profile detailing their experience with PD. This information is anonymously shared with recruiting trial teams, connecting interested volunteers and studies that need them.
MJFF also provides detailed information to help patients and caregivers learn about PD, available treatment options and the latest research breakthroughs. Our website hosts a rich library of content, and we are active across social media channels. We also offer monthly podcasts and webinars in which we cover a variety of Parkinson’s care and research topics.
GLL: How does MJFF currently support PD research in Europe?
SC: One of the biggest investments MJFF has made in Europe — and in the overall Parkinson’s research space — is the Parkinson’s Progression Markers Initiative (PPMI). PPMI is a landmark, international, observational biomarker study sponsored by MJFF with support from 16 industry partners. The goal of the study is to identify and validate Parkinson’s biomarkers to accelerate drug development.
PPMI is recruiting at 33 sites around the world, including sites in Germany, Norway, France, Spain, Italy, Greece, Austria and the United Kingdom. Data and samples acquired from PPMI participants are made available to the scientific community at large so that investigators, including members of the EAN, can bolster their own biomarker research. To date, PPMI data has been downloaded more than 325,000 times.
In addition to PPMI, MJFF has awarded over 400 grants to researchers in European countries, totaling over $80 million. As one example, the Foundation has granted significant funding to Austrian biotech AFFiRiS AG for development of a vaccine against the protein alpha-synuclein, which aggregates in cells of people with Parkinson’s.
GLL: What is Fox Trial Finder, and how has it contributed to PD research in Europe?
SC: Clinical trials rely on patient and control volunteers. No amount of funding can make up for a lack of study participants, and many trials are slowed due to recruitment needs. Fox Trial Finder is an online clinical trial matching tool established by MJFF in 2011, designed to address the need for Parkinson’s patient and control research participants. The site connects study teams and willing volunteers, those with and without Parkinson’s, who have created a profile with demographic and health history information.
Researchers receive a de-identified list of registrants who may qualify for their study and can then contact those potential volunteers directly through Fox Trial Finder’s secure messaging system. By facilitating these connections, the tool hastens the pace of research, speeding new therapies through the development pipeline. Fox Trial Finder is accessible to Parkinson’s clinical investigators worldwide. Since 2013, Fox Trial Finder has been available in French, Spanish, Italian and German. MJFF works with regional teams in France, Spain, Italy, Germany and Austria to provide local support to researchers and volunteers in these countries.
As of January 2015, Fox Trial Finder has registered more than 40,000 potential volunteers from 99 countries and lists 446 recruiting studies from 29 countries. Over 3,700 of those registrants and 97 listed studies are from Europe. Volunteers are from 39 European countries, led by the United Kingdom (1,357), Italy (942), Spain (486), Germany (445), Ireland (166) and Austria (90). Fox Trial Finder-listed trials are taking place in 15 European countries; Germany (28), France (19), Spain (13), Switzerland (7) and Italy (7) have listed the most studies.
GLL: How can the members of the EAN benefit from a web tool like Fox Trial Finder?
SC: Speeding volunteer enrollment into clinical trials is a key step towards advancing a cure and improved symptomatic therapies for Parkinson’s disease. Members of the EAN can use Fox Trial Finder to make people with PD and their loved ones aware of recruiting trials in their area. Practicing neurologists can learn more about ongoing, local studies and can review them with their patients. Fox Trial Finder provides a crucial link between potential Parkinson’s research volunteers and the investigators working every day to bring them better treatments.
Sohini Chowdhury is Senior Vice President, Research Partnerships at the Michael J. Fox Foundation for Parkinson’s Research