Roundtable on registries: practical considerations for registries – making them work, London, UK, 26 January 2017

Category: Meeting Report
Visits: 88 total, 2 today
Keywords: biologicals, biosimilars, monoclonal antibodies, pharmacovigilance, registries, regulation

Abstract:
Introduction: Disease or patient registries – collections of secondary data related to patients with a specific diagnosis, condition or procedure – offer an important mechanism of post-marketing surveillance of pharmaceuticals and a powerful set of tools for quality improvement. Registries represent a powerful and economic methodology to conduct outcomes research. A multidisciplinary consensus on the opportunities and risks involved in setting up disease registries will help plan for the next steps in registry development.
Methods: A variety of stakeholders, including clinicians, nurses, pharmacists, patient groups, regulators and industry representatives in the UK, met to discuss how registries can be set up, the role registries play in pharmacovigilance, and their use in improving healthcare data research. Patient groups discussed the issue of data safety and protection.
Results: Stakeholders agreed that patient registries, data collection at the point of care, and the ability to link between registries and routine clinic and hospital data were important goals. Achieving these will require extensive collaboration.
Conclusion: The value of disease or patient registries was recognised by all stakeholders involved in these discussions. It is vitally important that stakeholders currently working on registries keep an eye of future developments so that the data captured today remains of value to patients treated tomorrow and in the years to come.

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