• ADNI - Alzheimer's Disease Neuroimaging Network. See ADNI. A longitudinal study of progression in Mild Cognitive Impairment and Alzheimer's disease.
  • Affected Individual(s) - an individual, or a sample from that subject, in whom the diagnosis of interest has been made, or disease under study, has been diagnosed.
  • Alpha-synuclein-Alpha-synuclein (also α-synuclein) is a protein whose function in the healthy brain is currently under scientific study. It is a major constituent of Lewy bodies, protein clumps that are the pathological hallmark of Parkinson's disease.
  • BioFIND - A cross-sectional study of Parkinson's disease biomarkers led by Michael J. Fox Foundation, in collaboration with the NINDS.
  • Biomarker - A measurable substance in a living person whose presence is indicative of some phenomenon such as disease, disease subtype, exposure, or risk.
  • Biosamples (biospecimens) - Including blood, cell lines, DNA, or other biological material from a given subject.
  • Biosample Repository - In the context of the PDBP, a collection of DNA samples, immortalized cell lines, blood, plasma, CSF, urine, and other biosamples with accompanying clinical and pedigree data. For the PDBP, most biospecimens will be banked at the NINDS Repository (formerly a contract at Coriell, now funded through a grant to Indiana University, see BioSEND).
  • Biosample Resource Access Committee (BRAC) - Committee established by NINDS to oversee the policies for PDBP DMR biosample access.
  • Common Data Element (CDE) - Common Data Element (CDE). The NINDS currently has an effort underway to standardize clinical data collected on NINDS funded studies. See NINDS CDEs. These standardized clinical or pathological subject data, regardless of provider, will include essential elements in a consistent way that will be searchable by users.
  • Control - a sample collected from a subject who does not have the diagnosis under study; a "normal", "healthy" or "unaffected" individual or a sample from such an individual.
  • Cross-sectional - In terms of a scientific study (such as BioFIND), a study that evaluates individuals at a given or single point in time or in the course of an illness.
  • Dardarin - see LRRK2.
  • Data Access Committee (DAC) - Committee established by NINDS to oversee the policies for PDBP DMR data access.
  • Data submitter - Individual(s) who have clinical, imaging, genetic or biochemical biomarker data specific to a cohort or project supported through the NINDS PDBP.
  • Data user - Scientist and their institutional official who request access to data within the NINDS PDBP DMR.
  • Data Use Certificate - Document signed by the data user and the data user's institution which outlines the policies for PDBP DMR data use and access.
  • DbGaP - The database of genotype and phenotype, a National Library of Medicine (NLM) resource database designed to archive and distribute data from genome wide association (GWA) studies exploring the association between specific genes (genotype information) and observable traits (phenotype information). NCBI dbGaP..
  • DHHS - The United States of America Department of Health and Human Services.
  • DMR - Data Management Resource. For the PDBP, the Data Management Resource has a broad role in creating web-based forms to allow CDE data entry: curating entered data: managing data request forms: managing data associated with sample availability: managing sample requests: public outreach: other areas of data management and website resources for the PDBP.
  • Family history - An occurrence of a disease or disorder in a blood relative.
  • Federal Wide Assurance - a process by which Institutions and other organizations which work with human subjects undergo credentialing for such work under the ethical and legal standards in place under the United States Government. See Federal Wide Assurance..
  • Global Unique Identifier (GUID) - A unique (symbol/digit) code that can uniquely identify an individual within and across datasets. While the PDBP DMR creates a GUID by means of the Investigator entering some personally identifiable information (PII), this information is not kept by the DMR and is not associated with the GUID other than at the local site.
  • Healthy control- see Control.
  • Idiopathic - No known cause, for example, Idiopathic Parkinson's disease means that there is no known genetic cause, or other known cause.
  • Investigator - As also used in common parlance, a researcher who has funding to study a particular scientific question.
  • IRB - An Institutional Review Board (IRB) is a committee established to review and approve research involving human subjects. The purpose of the IRB is to ensure that all human subject research be conducted in accordance with all federal, institutional, and ethical guidelines.
  • Lewy Body - An intracellular collection of proteins, including alpha-synuclein, found in the neurons of people with Parkinson's disease and some related disorders. These can only be seen microscopically presently, and currently, only after a person has died.
  • LRRK2 - LRRK2 is an abbreviation for the gene named "Leucine-rich repeat kinase 2", which is also known as "dardarin"". Some variants of this gene are associated with an increased risk of Parkinson's disease. It can account for about 10% of PD worldwide, but is increased in Ashkenazi Jewish and North African Arab Berbers, accounting for 10-15% of Parkinson's disease in those populations.
  • Longitudinal - Over the course of time. For example, the PDBP studies people over several years, and collects data at several timepoints throughout the course of the study, and is, therefore, longitudinal.
  • Michael J. Fox Foundation - A Foundation that is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda. See https://www.michaeljfox.org/foundation/promise.html
  • MJFF - see Michael J. Fox Foundation.
  • National Institute of Neurological Disorders and Stroke - One of the Institutes and Centers at the National Institutes of Health. The National Institute of Neurological Disorders and Stroke has the mission to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.
  • NINDS - see National Institute of Neurological Disorders and Stroke
  • NINDS CDEs - see Common Data Elements.
  • NINDS Repository - see Biosample Repository.
  • Nigrostriatal - A region of the brain, involving both the striatum and the substantia nigra, which is affected in Parkinson's disease.
  • Non-Distribution Agreement - An agreement which outlines the terms of data and sample receipt in which the signer, and their institutional official, agree to not distribute data or samples received from the DMR or the NINDS repository to a third party. The DMR or the PDBP Project Officer, generally, will not authorize distribution of samples to investigators who have not signed and submitted such an agreement.
  • OHRP - The Office for Human Research Protections (of the US DHHS), OHRP.
  • OSHA - Occupational Safety and Health Administration (of the United States Department of Labor), OSHA.
  • PDBP - the NINDS Parkinson's Disease Biomarkers Program. For an overview of the program, see Notice NOT-NS- 11-020 (PDBP Grant).
  • PPMI - Parkinson's Progression Markers Initiative. A longitudinal study of a cohort of individuals with early stage Parkinson's disease, towards the goal of validation of biomarkers. PPMI is funded by the Michael J. Fox Foundation (MJFF), see PPMI.
  • Principal Investigator - A scientist, typically PhD or MD level, who conceives of, obtains funding for, publicizes, and manages research projects.
  • Prognostic - Predictive.
  • Qualification - In terms of Biomarkers, it refers to the FDA process by which formal feedback is given for rigorously developing biomarkers. See http://www.fda.gov/drugs/developmentapprovalprocess/drugdevelopmenttoolsqualificationprogram/ucm284076.htm.
  • Requestor - An investigator who requests data from the database or who requests samples from the biorepository
  • Striatum - A region of the brain, consisting of brain regions the "caudate nucleus" and the "putamen", both of which are impacted in Parkinson's disease.
  • Subject - An individual from whom clinical data and a biospecimen sample(s) has been drawn and submitted to the Data Management Resource and the NINDS repository, respectively.
  • Submitter - An investigator who submits data to the DMR, or both data to the DMR and biosamples to the repository.
  • Validation - In terms of a biomarkers study, the scientifically rigorous process by which a given biomarker discovery is repeated and found to be accurate in terms of measuring what it is supposed to, repeatable across several different labs, and consistent in it's measurements.