Ageing and Dementia

Overview

The steep increase in the incidence and prevalence of dementia parallels an ageing population across high, middle and low-income countries. Timely diagnosis, health-related quality of life and drug discovery for patients living with dementia, however, are markedly lacking. Advances in genomics promise to improve patient outcomes through facilitating drug discovery, elucidating risk reduction strategies and slowing disease progression. To realize this promise, research priorities, data governance mechanisms, and alternative frameworks for consent are needed. In particular, collaboration between dementia research and care, and improvement in the accessibility of genomic and health data within the scientific community should be promoted across borders. Respect for persons and data protections for patients living with dementia are priorities. This includes participation in research and its benefits.

The Ageing and Dementia Task Team will develop tools and policies to facilitate international data sharing and promote health innovations relating to dementia. Building on the GA4GH Framework, the Consent Policy, and the Privacy & Security Policy, the Task Team will address the legal, ethical and organizational challenges of data sharing in ageing populations suffering from dementia, which may include vulnerable or legally and decisionally-incompetent individuals.

Leadership

  • Martin Bobrow Martin Bobrow
    • Co-Lead, Group
  • Anna Mäki-Petäjä-Leinonen Anna Mäki-Petäjä-Leinonen
    • University of Eastern Finland
    • Joensuu, Finland
    • Co-Lead, Group

Coordinator

Team