What is data sharing?

Data sharing is the practice of making research data available to other investigators.

What is data standardization?

Data standardization is the critical process of bringing data into a common format that allows for collaborative research, large-scale analytics, and sharing of sophisticated tools and methodologies.

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What is data harmonization?

Data harmonization involves transferring data from a source system, often a proprietary one, to a common data representation, such as OHDSI’s OMOP CDM. This process can vary in complexity depending on how the source data is structured, how the information is coded (or not coded), language, volume of data, and other factors.

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What does ETL stand for?

ETL is short for extract, transform & load. Three database functions that are combined into one tool to pull data out of one database and place it into another database.

  • Extract is the process of reading data from a database. In this stage, the data is collected, often from multiple and different types of sources.
  • Transform is the process of converting the extracted data from its previous form into the form it needs to be in so that it can be placed into another database. Transformation occurs by using rules or lookup tables or by combining the data with other data.
  • Load is the process of writing the data into the target database. The ETL process is often used in data warehousing.
What do the FAIR principles stand for?

The FAIR Data Principles are a set of guiding principles in order to make data “findable”, “accessible”, “interoperable” and ”reusable”.

What is the GDPR?

The General Data Protection Regulation (EU) 2016/679 is a regulation in EU law on data protection and privacy in the European Union (EU) and the European Economic Area (EEA). It also addresses the transfer of personal data outside the EU and EEA areas. The GDPR aims primarily to give control to individuals over their personal data and to simplify the regulatory environment for international business by unifying the regulation within the EU. Superseding the Data Protection Directive 95/46/EC, the regulation contains provisions and requirements related to the processing of personal data of individuals (formally called data subjects in the GDPR) who reside in the EEA, and applies to any enterprise—regardless of its location and the data subjects' citizenship or residence—that is processing the personal information of data subjects inside the EEA.

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What is OHDSI?

Observational Health Data Sciences & Informatics is a multi-stakeholder, interdisciplinary collaborative to bring out the value of health data through large-scale analytics. All their solutions are open-source.

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What is the OMOP CDM?

OMOP stand for the Observational Medical Outcomes Partnership. The OMOP Common Data Model (CDM) allows for the systematic analysis of disparate observational databases. The concept behind this approach is to transform data contained within those databases into a common format (data model) as well as a common representation (terminologies, vocabularies, coding schemes), and then perform systematic analyses using a library of standard analytic routines that have been written based on the common format.

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What is the difference between Regulatory agencies, HTA bodies and payers?

All of these play key roles in enabling people to access new drugs. This includes approving and assessing the quality, safety and efficacy of medicines (regulators); reviewing the clinical and in some cases, the cost effectiveness of medicines compared with standard practice (HTA bodies); and funding access to health care and support for people with neurodegenerative disorders (payers).