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The many uses of data in public clinical trial registries

Clinical trial registries were originally set up to improve the medical evidence base by ensuring that trials cannot vanish without a trace – or be deliberately ‘disappeared’ – if they find that a medicine or other treatment provides no benefit to patients.

Registries thus enable scientists to gain an overview of all relevant research, rather than only of those studies that produced ‘positive’ results, and help to curb evidence distortion and research waste in medicine.

A new publication by Gayatri Saberwal documents that trial registries have numerous additional uses and benefits, some of which were not foreseen when registries were first established:

  • Support the recruitment of patients into clinical trials

  • Provide more information on trial designs and outcomes than journal articles do

  • Enable analyses of global and national trial landscapes, including the increase in trial activity in some countries in the Global South and changes over time

  • Identify gaps in research, for example by comparing a country’s disease burden with its clinical research efforts

  • Provide data on the enrolment of specific population groups, such as pregnant women

  • Improve the scientific literature by comparing planned trial outcomes with subsequent publications of results in medical journals

  • Identify failures of trials to enrol the planned number of participants, which could lead to underpowered studies

  • Evaluate the relative efficacy of various interventions

  • Assess which proportion of trials meet key methodological quality criteria, and whether that proportion is changing over time

  • Provide a ‘scaffolding’ or infrastructure for scientific research where various documents and data sets related to trials can be permanently archived

  • Map out the landscape of interventions for a particular condition, and identify future priorities for innovation

  • Use data on trial suspensions to identify possible regulatory shortcomings

  • Identify disease areas attracting low commercial research activity that may require more public investment

  • Help public health bodies to anticipate future costs from emerging medical innovations

The paper concludes that:

“In summary, researchers have posed an extraordinarily wide range of questions of registry data in the areas of transparency; health; science; innovation; ethics; regulatory issues; economic implications; globalization; and holding journals to account.”

“We should be aware of these many uses as they highlight the importance of (a) establishing and maintaining registries, (b) ensuring that trial records are comprehensive and accurate, and (c) funding research on registry data, and facilitating such research in other ways.”

The full publication, titled “The many uses of data in public clinical trial registries,” is available online.

Note: TranspariMED regards the uses of trial registries listed in the paper as non-exhaustive. For example, the paper does not note that registry data provides paywall-free access to trial outcomes, and can be used to precisely quantify research waste and to study the impact of systemic shocks on research efforts. However, this brief and densely referenced publication provides useful inspiration for meta-researchers seeking to use registry data to answer important new research questions, and constitutes an excellent starting point for more exhaustive research into the breadth and scale of the value added by the global network of trial registries.

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