Through a single data use agreement, researchers can today apply for access to the knowledge portal and interact with the entire data set here. The AMP PD Knowledge Portal contains data from cerebrospinal fluid, RNA, plasma and DNA samples previously collected through programs including The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and National Institute of Neurological Disorders and Stroke (NINDS) BioFIND Study, the Harvard Biomarkers Study of Brigham and Women’s Hospital and Massachusetts General Hospital, the NINDS Parkinson’s Disease Biomarkers Program, and MJFF’s Parkinson’s Progression Markers Initiative. Additionally, AMP PD provides a platform that can incorporate additional data sources and new types of data, including proteomics, a project already planned.
“AMP PD is a true example of the whole being greater than the sum of its parts,” said Walter Koroshetz, M.D., director, National Institute of Neurological Disorders and Stroke (NINDS). “The combination of many data sets could allow researchers greater power to analyze potential biomarkers for Parkinson’s disease. This effort follows other AMP programs which have the shared goal of changing the way we go about the business of studying disease.”
The Accelerating Medicines Partnership (AMP) program for Parkinson’s disease (PD) has launched a data portal to provide de-identified information collected from 4,298 PD patients and healthy controls to researchers working to develop effective therapies for the disease. The portal enables researchers to study complex data sets and perform genome-wide analyses at a scale previously impossible.
AMP PD is a public-private partnership between the National Institutes of Health, the U.S. Food and Drug Administration, with industry (Celgene, GSK, Pfizer, Sanofi and Verily) and non-profit (The Michael J. Fox Foundation for Parkinson’s Research) organizations and managed through the Foundation of the National Institutes of Health (FNIH). The goal of this partnership is to transform and accelerate drug development in PD by providing the expertise and support needed to determine which biomarkers show the greatest potential for predicting PD and the progression of the disease.
“One important part of this platform is that, in addition to providing a place for storing complex data, we are also providing the tools to analyze that data within the platform itself,” said Debra Babcock, M.D., Ph.D., program director at NINDS and co-chair of the AMP PD Steering Committee. “In this way, we are bringing scientists to the data, which will increase opportunities for collaboration.”
“The AMP model has provided a unique platform for bringing together diverse patient cohorts, advances in technology and scientific expertise to study Parkinson’s disease on a scale that has not been attempted before,” said David Wholley, Senior Vice President, Research Partnerships, FNIH. “With the AMP PD Knowledge Portal, we are helping the scientific community worldwide to fast-track discoveries that we hope will ultimately help Parkinson’s disease patients and their families.”
Over the past 18 months, AMP PD scientific teams have worked to ensure that the data added into the portal was accurate and described in a consistent way. This crucial step, called data harmonization, allows information gathered from different programs to be compared, and it also provides best practices for how to integrate new data provided by the community into the platform. One of the unique features of these data is that they are longitudinal – it will allow researchers to analyze data from across an individual’s lifespan or disease course.
About AMP PD: The Parkinson’s disease initiative is a part of the Accelerating Medicines Partnership, a joint venture between the National Institutes of Health, the U.S. Food and Drug Administration, six industry partners and one non-profit organization, managed by the Foundation for the NIH, to identify and validate promising biomarkers for Parkinson’s disease.
NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.
About the Foundation for the National Institutes of Health: The Foundation for the National Institutes of Health (FNIH) creates and manages alliances with public and private institutions in support of the mission of the NIH. The FNIH works with its partners to accelerate biomedical research and strategies against diseases and health concerns in the United States and across the globe. Established by Congress in 1990, the FNIH is a not-for-profit 501(c)(3) charitable organization. For additional information about the FNIH, please visit fnih.org.
About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
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