On Wednesday 28 November AMRC published a new report, Saving lives with patient data registries, showcasing some of the innovative registry activity underway across the medical research charity sector. The report includes a number of case studies from across our membership and provides an insight into the benefits that registries can deliver to patients and medical research. The report is intended to kick-start a more substantial dialogue between charities, government, national data controllers, industry and other stakeholders to ensure that the UK works to develop an optimum environment for sharing and linking data that includes registries.

Launching the report as part of the engagement during our Day in Westminster, Professor Sir John Bell spoke of the key roles that patient registries can play in the UK’s expanding health data landscape. Sir John authored the Life Sciences Industrial Strategy which recommended the creation of national registries of condition-specific data across the whole of the NHS in England in alignment with the relevant charity.

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