Navigating the complexities of international data transfer law to advance brain health research

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Authors: Edel McNamara, Cassie Smith, Eoghan Forde, William Whiteley, Pearse Andrew Keane, Siegfried K. Wagner, Jackie Caldwell, Anne Wozencraft, Robert Wallace, Eden Ruffell, Manjit Benning, Mya Bibra
+6 more Brenda S. Bauer, Kara Moraw, Andrew L. Brooks, Rawlinson, Polly, Matthew H. S. Clement, Neil Postlethwaite
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Abstract

At the time of this article, dementia is a growing global health challenge, with an estimated 153 million people expected to be affected by 2050. Advancing understanding, treatments, and preventive strategies depends on secure and trustworthy access to high-quality health data. However, international data sharing remains difficult due to complex legal and regulatory frameworks. This article draws on projects commissioned by the Alzheimer’s Disease Data Initiative, which explore collaborative and legally compliant approaches to international data sharing. Both projects use flagship UK datasets maintained by Moorfields Eye Hospital NHS Foundation Trust and Public Health Scotland, which have significant potential to drive innovation and discovery in Alzheimer’s disease and broader brain health research if accessed securely and lawfully by international research teams. We examine the legal complexities of cross-border data sharing and highlight how emerging privacy enhancing technologies can help overcome barriers. Finally, we show how technical and governance solutions have enabled the two pilot studies to create a trustworthy environment for international collaboration in the fight against Alzheimer’s disease.

Fields of Study & Subjects

Digitalization Law and Regulation Ethics in Clinical Research Thoreau and American Literature

Publication details

Journal / source
Zenodo (CERN European Organization for Nuclear Research)
Publication date
12 February 2026
Language
EN