Although MS has traditionally been thought of as a disease more prevalent among White populations, recent studies show that African Americans may have the highest risk for not only for MS, but for more aggressive forms of the disease. African Americans and Latinos are also less likely to receive health services and treatments. Minorities have lower representation rates in MS medical research.
"There is a tremendous need to involve minority communities in the design and development of research, and to engage researchers in increasing their representation in clinical studies," said Robert McBurney, President and CEO of the Accelerated Cure Project for MS. "This award will allow ACP to grow vital minority engagement in our own patient-powered MS research network, iConquerMS™, and in numerous other MS research projects. We are pleased that PCORI has recognized the potential this program has to make important inroads in building minority participation, not only in MS research, but in all areas of medical research."
Focusing primarily on African-American and Hispanic-American communities, the Partnership Network will develop a partnership structure, strategy, and toolkit to support a variety of outreach activities, based on the analysis of barriers conducted by the network and the resulting strategies that are developed by the network in the first two years. ACP intends to build upon gains made beyond the period of the contract and serve as a model for outreach in other disease areas as well.
"Community participation in identifying key issues and solutions is of paramount importance to meaningful and relevant research and to sustainable change," said Monique LaRocque, M.P.H., Senior Vice President at Feinstein Kean Healthcare. "The Partnership Network will bring more patients, caregivers, clinicians, researchers, and other healthcare stakeholders into the multiple sclerosis research process to build a community that is better equipped to participate in patient-centered research. It will be an inclusive, comprehensive, and far-reaching program that leverages synergies with the iConquerMS™ initiative."
"As a Black woman living with multiple sclerosis, I am ecstatic that PCORI is recognizing the Accelerated Cure Project's MS efforts," said Anita Williams, an iConquerMS™ member and patient advisor to the minority engagement project. "It is so important to understand the barriers preventing underrepresented groups from participating in MS research and I am excited that there will a dedicated network to help address disparities in MS."
The project is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI's work.
"This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake," said Jean Slutsky, PCORI's Chief Engagement and Dissemination Officer. "We believe the results of this project may have potential to improve outreach among different underrepresented populations and other disease states, and we look forward to following its progress and working with ACP to share the results."
ACP's project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI's engagement goals and objectives, as well as program criteria. For more information about PCORI's funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
About Accelerated Cure Project for MS
Accelerated Cure Project for MS (ACP) is a nonprofit organization whose mission is to accelerate research efforts to improve diagnosis, to optimize treatment and to cure MS. ACP believes that research is the only way to greatly improve the outlook for people with MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers with data and biospecimens they need to explore novel research ideas that can lead to better diagnoses, to new treatments and to cures for people with MS. Its resources have supported more than 100 research studies worldwide that have generated more than 1 trillion returned data points for collaborative data mining and disease modeling. To learn more about the focus, activities, and impact of ACP, please visit http://www.acceleratedcure.org.
About Feinstein Kean Healthcare
Feinstein Kean Healthcare (FKH) is a leading strategy and communications partner for emerging and established organizations whose innovations are helping to transform life sciences and healthcare. The firm works with clients at the intersection where disruptive technologies and ideas influence medicine, clinical research and practice, business models, public policy, and public opinion and behaviors. For 25 years, FKH has been a trusted partner to leading pharmaceutical, healthcare, technology, biotechnology, informatics, and patient advocacy organizations. Hundreds of clients have turned to FKH to develop and execute programs that drive product commercialization; forge partnerships; transform markets; build constituencies; and help to shape policies. FKH established the first personalized medicine practice in the nation in 2004, and has worked with commercial, academic, and government innovators to advance adoption of personalized medicine approaches ever since. Learn more at http://fkhealth.com/.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. PCORI has awarded a total of $464.4 million since it began funding CER in 2012. For more information about PCORI funding, visit http://pcori.org/funding-opportunities. More information is available at www.pcori.org.
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SOURCE Accelerated Cure Project for Multiple Sclerosis