Glossary of Terms
Welcome to the glossary of terms for ONDRI. Enclosed you will find definitions for select words that are found on this website. These words may not be used by most readers on a day-to-day basis.
This list is in alphabetical order. If you have any comments or suggested additions, please contact us at firstname.lastname@example.org
Assessment Platform/Platform: In a clinical trial, an assessment platform, or a platform, is a unique network of clinicians, technical experts and other supportive parties. This group works together to set standards and processes for their assessments and tests (e.g. neuropsychological assessment) that will take place during the trial. The site study teams then ensure that each platform’s assessments are completed by the study participants as per the study protocol.
Biomarker: This technical term refers to a measurable and quantifiable biological detail that serves as an indicator of a particular physiological state. A physiological state is a characteristic of a body’s normal or healthy functioning. As an example, a biomarker for diabetes is the body’s blood sugar level.
Biostatistics: This term is a combination of biology (the science of living organisms) and statistics (the science of collecting and analyzing numerical data in large quantities). Biostatistics refers to the science of collecting and analyzing numerical data that has to do with biology.
Care Partner: This term is used to describe someone who participates in the care of another person(s), typically in an unpaid manner. To many, this term is preferable and more accurate than ‘caregiver’. Another term that can be used is carer.
Cohort: This is a term common in clinical research (and other applications). A cohort is a group of people that shares one or more common statistical characteristic. In research, this characteristic(s) would typically be relevant to the subject of the research study.
Common Data Elements (CDEs): CDEs help define and format the different types of variables in the data that researchers analyze. They allow for consistency in data collection across studies, improved quality of the data collected, and they increase opportunities for sharing, linking and cross-study analysis.
Cross-Disease: In this context, cross-disease refers to analyzing the same data across the different disease groups studied. This work is supplemented by ‘within-disease’ analysis, where similar analytical work is done within the disease group being studied. The primary goal of cross-disease work, within ONDRI’s context, is to find early indicators of disease. CDE’s (defined above) help facilitate cross-disease analysis.
Cross-Platform: In this context, cross-platform, or cross-assessment platform, refers to analyzing the same data across the different platforms that have been employed in a study. This work is supplemented by ‘within-platform’ analysis, where similar analytical work is done within the data that has been collected for the specified platform. The primary goal of cross-platform work, within ONDRI’s context, is to find early indicators of disease. For definition of platform, see below. CDE’s (defined above) help facilitate cross-disease analysis.
Deeply Characterized: This is an adjective that describes the depth of the collection of core physical and psychological characteristics of the subject matter, in this case study participants. These core characteristics can occur as a result of both genetics and individuals’ environment.
Fit for purpose: This is an adjective that indicates that a product or service meets a necessary or appropriate standard for its intended use.
Neurodegeneration: This term refers to the gradual loss of structure and function of brain cells. There are many diseases that are caused by neurodegeneration in different parts of the brain.
Neuroinformatics: This term is a combination of neuro (to do with the brain) and informatics (the science of processing data for storage and retrieval). Neuroinformatics refers to the science of processing data to do with the brain.
NOTCH3: This is an acronym for ‘Neurogenic locus notch homolog protein 3′. NOTCH3 is a gene that encodes protein. Mutations of NOTCH 3 are thought to cause CADASIL.
Person/People Living With (a disease) or Person/People With Lived Experience (in this instance, of a disease): These are terms whose origin is from qualitative research. They refer to a representation of the experiences and choices of a given person, and the knowledge that they gain from these experiences and choices. In the context of ONDRI, ‘people with lived experience’ or ‘people living with’ are study participants who are living with one of the diseases being studied. This term includes care partners (see above for definition).
Remote Patient Monitoring (RPM): This term refers to the practice of using the latest advances in information technology & tools, to gather a participating patient’s data, outside of traditional healthcare settings. The focus of RPM is on bridging the collection of key measures guiding health care from clinics or hospitals to the home and community.
Team Science: This is a concept that refers to collaborative and often cross-disciplinary, or cross-specialty, approaches to answering questions in research (and other aspects of science). Team science – in a practical sense – involves people working together collaboratively, breaking traditional silos.
Ventricle/Ventricular volume: The ventricle is the large cavity deep in the brain, which produces the cerebrospinal fluid. This fluid circulates inside and outside the brain to cushion and protect the brain from blows to the head; it also mixes with fluid between brain cells to help remove the products of daily metabolism, including toxins. Ventricular volume enlarges as the brain shrinks with age and disease. Ventricle size is an important indicator of brain health.
Wearables: The term wearables – as used in healthcare research – refers to technologies that can be placed on the body of study participants. These technologies monitor and track various health-related measures (e.g. blood pressure, activity) remotely, while people go about their daily lives in their homes and communities. Wearables devices, or wearables, are tools that are used in the practice of remote patient monitoring (defined above), also known as remote monitoring.