Glossary

Abatement

A diminution, decrease or easing. In medicine there may be abatement of pain or any other symptom or sign. In the environment there may abatement in the degree of pollution.

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.

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.

Biosamples (biospecimens)

Including blood, cell lines, DNA, or other biological material from a given subject.

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 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.

Data user

Scientist and their institutional official who request access to data within the NINDS PDBP DMR.

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.

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.

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.

Macrobiotic

Referring to the macrobiota, a region's living organisms that are large enough to be seen with the naked eye.

Michael J. Fox Foundation (MJFF)

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.

National Institute of Neurological Disorders and Stroke (NINDS)

One of the Institutes and Centers at the National Institutes of Health. The National Institute of Neurological Disorders (NINDS) 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.

Nigrostriatal

A region of the brain, involving both the striatum and the substantia nigra, which is affected in Parkinson's disease.

NINDS

see National Institute of Neurological Disorders and Stroke

NINDS CDEs

See Common Data Elements.

NINDS Repository

See Biosample Repository.

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 https://www.fda.gov/Drugs/DevelopmentApprovalProcess/DrugDevelopmentToolsQualificationProgram/BiomarkerQualificationProgram/ucm20086360.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.