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Term of the Day

Natural history study

A natural history study is a preplanned observational study intended to track the course of a disease over time, identifying demographic, genetic, environmental and other variables that correlate with its development and outcomes in the absence of intervention, or under standard of care. Designs may be retrospective (chart review of existing records) or prospective (longitudinal follow-up of a cohort or registry).

Natural history data is particularly important in rare and paediatric diseases, where randomised placebo-controlled trials may be infeasible or unethical. The FDA (guidance on rare disease natural history studies, 2019) and the EMA accept well-designed natural history studies to define endpoints and biomarkers, identify patient subgroups, estimate sample sizes and, in some cases, serve as external or historical control arms for single-arm trials supporting orphan products.

Because they are non-interventional, natural history studies fall outside the CTR and are governed by national law (for example France's MR-003 or MR-004 reference methodologies) and by the GDPR. They typically involve secondary use of medical records, long-term follow-up, genetic data and small populations in which anonymisation is rarely achievable, so pseudonymisation, a DPIA and a robust research legal basis under Art. 9(2)(j) are essential. Registries maintained by patient organisations or academic consortia raise additional questions of joint controllership and data access governance.

E

Enterprise

An enterprise means a natural or legal person engaged in an economic activity, irrespective of its legal form, including partnerships or associations regularly engaged in an economic activity (Art. 4(18) GDPR). The definition mirrors EU competition law and is deliberately broad: a sole trader, a foundation running a hospital or a university spin-out all qualify.

The related concept of a group of undertakings, meaning a controlling undertaking and its controlled undertakings (Art. 4(19)), has three practical consequences. First, binding corporate rules under Art. 47 can only be used within a group of undertakings or group of enterprises engaged in a joint economic activity. Second, Recital 48 recognises a legitimate interest in transmitting personal data within a group for internal administrative purposes, which supports intra-group sharing of employee and client data. Third, administrative fines under Art. 83 are calculated on the total worldwide annual turnover of the "undertaking", which the Court of Justice (Deutsche Wohnen, C-807/21) has confirmed means the economic unit, potentially the whole group, not the individual legal entity.

For a biotech subsidiary of a US parent, or a CRO belonging to an international group, this means that the exposure to fines and the options for transfer mechanisms are assessed at group level, which argues for group-wide governance rather than entity-by-entity compliance.

Does the GDPR apply only to incorporated companies?

No. Its application is not limited to a particular corporate form or company size. A sole trader, partnership or non-profit organisation can have data-protection responsibilities when its processing falls within the GDPR’s scope. For a research collaboration, identify the actual entities and their roles rather than relying on the label “enterprise”.