Glossary of Terms

Academic Medical Center: A hospital that is organizationally and administratively integrated with a medical school.

Aggregate Data: A view of data that is presented as summarized findings that cannot be traced back to an individual.

Amazon Workspace: A managed and secure cloud desktop service.

Application(s): A software program or group of programs designed for end-users.

Application Programming Interface (API): Software intermediary that allows two applications to talk to each other.

Biobank: A storage facility of biological materials for use in research.

Biospecimen: Biological material stored in a biobank for scientific research.

Biospecimen Metadata: Summary information about biospecimen data.

Broad Research Consent/Broadly Consented: A type of consent by patients and families that permits researchers to engage in research use of identifiable biological specimens and identifiable data without the requirement to obtain additional consent for the future storage, maintenance, or research uses, so long as the future activities are within the scope of the broad research consent.

Cloud-hosted Environment: An organization's computing and storage resources, which are outsourced to a service provider that offers its infrastructure services in a utility model.

Consent: The voluntary agreement of an individual or their legally authorized representative for participation in a study.

Data: Information that is grouped together for analysis.

Data Commons: An IT database management system or network, which creates a resource for managing, analyzing and sharing data.

Data Science Tools: Tools that help combine domain expertise, programming skills, and knowledge of mathematics and statistics to extract meaningful insights from data.

De-identified Information: A record in which identifying information is removed.

Electronic Health Record (EHR): An electronic health record is the systematized collection of patient and population electronically stored health information in a digital format. These records can be shared across different health care settings.

Elucidate: To make (something) clear; explain.

End-user: The person who actually uses a particular product.

Fast Healthcare Interoperability Resources (FHIR): A standard describing data formats and elements and an application programming interface for exchanging electronic health records.

Federation: Multiple organizations formed into a single centralized unit, within which each organization keeps some internal autonomy.

Federated Data Commons: An IT database management system or network, which transparently

maps multiple autonomous database systems using a central query tool. The constituent databases are geographically decentralized and are interconnected via a computer network. All data remains local at each institution.

Genetic Variation: The diversity in gene frequencies. Genetic variation can refer to differences between individuals or to differences between populations.

Genomics: The study of a person’s complete DNA set, including all of a person’s genes.

Genomic Data: Information about the genetic makeup of an individual.

Genomic Sequence: The DNA sequence of an individual.

Instrument (verb): To equip (something) with measuring instruments.

Investigator: An individual responsible for the preparation, conduct, and administration of a research grant, cooperative agreement, training or public service project, contract, or other sponsored project.

Metadata: a set of data that describes and gives information about other data.

Module: Each of a set of standardized parts or independent units that can be used to construct a more complex structure.

Modular: Employing or involving a module or modules as the basis of design or construction.

Natural Language Processing (NLP): The automatic manipulation of natural language, like speech and text, by software.

Patient-level Data: Data collected on a patient.

Personal Identifying Information: Data that could potentially be used to identify a particular person.

Phenotypic Data: Clinical information from a patient's electronic health record.

Portal: A specially designed website that brings information from diverse sources in a uniform way. A portal is a web-based platform that provides portal users, with a single access point to information.

Prep-to-research Portal: A portal to identify prospective research participants for a research study.

Query: To search.

Queryable: Searchable.

Reference Database: A database that holds enough information that a researcher can refer to for context.

Research Participant: An individual who voluntarily participates in human subject research after giving informed consent to be the subject of the research.

Scalable: Able to grow.

Study Portal: A portal that builds and organizes data to be tested in a common space.