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L
Legal basis for processing
L
Legally designated representative
L
Limited storage periods
L
Local Site Investigator
N
Natural History Study
O
Observational Study
O
Observer-reported outcome (ObsRO)
O
Orphan Drug Designation (ODD)
P
Patient-reported outcome (PRO)
P
Performance outcome (PerfO)
P
Personal data
P
Personal data breach
P
Pharmacokinetics (PK)
Population Pharmacokinetics
P
Population pharmacokinetics (pop PK)
P
Principal investigator
P
Principles of data protection
P
Privacy
P
Privacy Enhancing Technologies (PETs)
P
Privacy Enhancing Technologies (PETs)
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Term of the Day

Natural History Study

A natural history study is a preplanned intended to track the course of the disease. Its purpose is to identify demographic, genetic, environmental, and other variables (e.g., treatment modalities, concomitant medications) that correlate with the disease’s development and outcomes. Natural history studies are likely to include patients receiving the current standard of care and/or emergent care, which may alter some manifestations of the disease.

E

European Data Protection Board (EDPB)

The European Data Protection Board (EDPB) is an independent European body, which contributes to the consistent application of data protection rules throughout the European Economic Area (EEA), and promotes cooperation between the EEA’s data protection authorities.

The EDPB is composed of representatives of the national data protection authorities, and the European Data Protection Supervisor (EDPS). The supervisory authorities of the EFTA EEA States are also members with regard to the GDPR related matters and without the right to vote and being elected as chair or deputy chairs. The EDPB is established by the General Data Protection Regulation (GDPR), and is based in Brussels. The European Commission and -with regard to the GDPR related matters- the EFTA Surveillance Authority have the right to participate in the activities and meetings of the Board without voting right.

The EDPB has a Secretariat, which is provided by the EDPS. A Memorandum of Understanding determines the terms of cooperation between the EDPB and the EDPS. In addition to providing the Secretariat of the EDPB, the EDPS is also a full member of the EDPB and contribute actively to the discussions and drafting of documents published by the EDPB. The EDPS participates on a regular basis in the plenary and Expert subgroup meetings of the EDPB.

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