The National Institute of Neurological Disorders and Stroke (NINDS) Parkinson's Disease Biomarkers Program (PDBP) Data Management Resource (DMR) is a web-based tool and resource for the Parkinson's Disease Biomarkers Community.
The PDBP DMR includes development of a web-based data management system that provides tools to PDBP supported projects for both the collection and quality assurance of data in a standardized format. The DMR also coordinates the assembly of de-identified data into a common database thus enabling the query and distribution of aggregate data for the acceleration of PD biomarker discovery and validation. The PDBP data management resource synchronizes efforts across government and non-government organizations involved in PD biomarker research as well, by developing a federated database. It also serves the general public by providing a website with updated content on projects and their scientific discoveries funded via the NINDS PDBP.
A key component of the DMR is to ensure that no subject's identity is ever revealed (that is, all the information collected is de-identified). The DMR has developed a system whereby all data is de-identified and no person can be identified with the information it collects.
At the National Institutes of Health (NIH), the NINDS is the primary institute supporting PD research: in fiscal year 2011, the NINDS funded approximately $96 million out of a total of $151 million in NIH-supported PD research. The NINDS supports basic, translational and clinical research programs through a variety of mechanisms, including the Morris K. Udall Centers of Excellence for Parkinson's Disease Research, each of which are directed toward advancing knowledge of and improving treatments for PD. Another important part of our Parkinson's Disease Research Portfolio is the Parkinson's Disease Biomarkers Program (PDBP).
The purpose of this NINDS website is twofold: to provide PD-related information and resources for researchers as well as for persons with PD, caregivers and families.
The NINDS Parkinson's Disease Research Centers of Excellence program was developed in honor of former Congressman Morris K. Udall of Arizona. Mr. Udall was elected to the U.S. House of Representatives in 1961 in a special election to replace his brother Stewart, who left the position to become President John F. Kennedy's Secretary of Interior. Representative Udall was diagnosed with PD in 1979; however, he remained active in Congress until his retirement in May 1991. He died in 1998 after a long battle with the disease. On November 13, 1997, the President of the United States signed the Morris K. Udall Parkinson's Disease Research Act of 1997 into law (P.L. 105-78).
In 1997, the NINDS released a Request for Applications to establish the first Morris K. Udall Centers of Excellence in Parkinson's Disease Research. Udall Centers utilize a multidisciplinary research approach to elucidate the fundamental causes of PD as well as to improve the diagnosis and treatment of patients with Parkinson's and related neurodegenerative disorders.
The Morris K. Udall Centers of Excellence Program continues to forge a strong and innovative path in PD research. These Centers carry out important research on PD, including the identification and characterization of candidate and disease-associated genes, examination of neurobiological mechanisms, establishment of improved PD models, development and testing of potential therapeutics, and novel avenues of clinical research.
Several PDBP projects are also associated with Udall Centers, which furthers the goals of these Centers to create and foster an environment that enhances the research effectiveness of investigators in a multidisciplinary setting, utilizing specialized methods relevant to the study of this disorder.
Projects which are associated with NINDS Udall Centers:
PI Name: DUBOIS BOWMAN
Grant Title: Analytic Methods for Determining Multimodal Biomarkers for Parkinson's Disease (U18)
Institute: Emory University
PI Name: ALICE CHEN-PLOTKIN
Grant Title: Unbiased Approaches to Novel Biomarker Discovery in Parkinson's Disease (U01)
Institute: University of Pennsylvania
PI Name: TED DAWSON
Grant Title: Johns Hopkins Medicine Biomarker Discovery in Parkinson's Disease (U01)
Institute: Johns Hopkins University
PI Name: JING ZHANG
Grant Title: Large Scale Biomarker Discovery and Validation for Parkinson's Disease (U01)
Institute: University of Washington
The Harvard NeuroDiscovery Center is a pioneering biomedical research group focused on ending suffering from neurodegenerative diseases. A component of the Harvard NeuroDiscovery Center is the Biomarkers Core. The Biomarkers Core aims to discover and validate biomarkers for neurodegenerative diseases. The NINDS Parkinson's Disease Biomarkers Program has established a collaboration with the Biomarkers Core of the Harvard NeuroDiscovery Center through Dr. Clemens Scherzer, one of the PDBP Principal Investigators.
The Harvard NeuroDiscovery Center Biomarkers core is a longitudinal case-control study of over 2,000 individuals with early-stage PD, MCI/AD, and controls without neurologic disease. High-quality biosamples and high-resolution clinical phenotypes are tracked annually for several years. To minimize bias, controls are enrolled from the source population. Biospecimens include plasma, serum, RNA, and whole blood, as well as DNA and immortalized cell lines, and ultimately, brain autopsy. Cerebrospinal fluid is longitudinally collected in a subset.
A major aim of the program is to provide data and bio-specimens to other investigators engaged in biomarker discovery and development. They are accepting proposals from local, national and international investigators. Two NINDS Program Directors are on the Biospecimen request review committee to solidify the relationship between PDBP and the Harvard NeuroDiscovery Center.
The Michael J Fox Foundation (MJFF) has made Biomarkers a research priority. The Michael J. Fox Foundation has been a leader in Parkinson's disease biomarker discovery, optimization and verification through multiple funding and strategic initiatives. These include supporting the development of biological assays for detecting disease-relevant proteins in blood and CSF, and testing imaging methods (e.g., transcranial sonography, MRI and PET) as possible biomarkers for Parkinson's disease. Currently, The Foundation is sponsoring the Parkinson's Progression Marker Initiative (PPMI), a five-year landmark clinical study aiming to identify biomarkers of Parkinson's disease progression. They also are funding the BioFIND project in collaboration with the NINDS. BioFIND is a cross-sectional study which is collecting clinical data and biospecimens which can be utilized by investigators for biomarkers discovery.