WHO Archives - JPND Neurodegenerative Disease Research

JPND members are helping to move forward G7 activities in dementia research.

Making better use of data and sharing it among the research community may accelerate neurodegenerative disease research, as it offers the promise of larger and wider datasets that enable new insights from both well-established and novel sources and types of data. Furthermore, moving beyond established medical data into big data offers the potential to tap into routinely collected data from both within and outside health systems.

In December 2013, the G8 Global Dementia Summit in London identified the better use of available data, resource sharing and researcher collaboration as key priorities. With the ambition to find a cure or disease-modifying therapy by 2025, the G8 health ministers mandated the OECD to report on how big data can be used and shared more efficiently for dementia research.

The results of the OECD review on big data were recently published and presented to the G7 health ministers at the first WHO Ministerial Conference on Global Action Against Dementia in Geneva in March 2015. This case-study review provides an evaluation of existing data sharing practices in research on age-related neurodegenerative diseases. Four exemplar data sharing initiatives (ADNI, AddNeuroMed, UK Biobank and the Swedish Brain Power studies) were examined to better understand current data sharing practices in dementia research and to recommend the next steps required to move forward.

The OECD report was published under the advice of an International Advisory Group chaired by JPND Executive Board member Robin Buckle, with Philippe Amouyel (JPND Management Board Chair), Yves Joanette (JPND MB member, Canada) and Martin Rossor (Vice-Chair JPND SAB) also participating.

This follows the publication in February 2015 of an OECD compendium of current thinking in this area, bringing together a number of position papers on the use of big data in dementia research. These papers emanated from a workshop at the G7 legacy workshop in Ontario in 2014.

Finally, a wider description of this activity and the emerging big data and open science activities is described within the annual reports of both the World Dementia Council and the G7 Global Action against Dementia (GAAD), both published to coincide with the Geneva WHO Ministerial Conference.

On 16 and 17 March 2015, the World Health Organization (WHO) hosted its first Ministerial Conference on Global Action Against Dementia. Ministers from around the world, as well as experts from the research, clinical and NGO communities, came together in Geneva for the first time to discuss the global problems posed by dementia.

The aim is to raise awareness of the socio-economic burden created by dementia, and to highlight that this burden can be reduced if the world collectively commits to placing dementia high on the global public health agenda.

The first day of the conference covered issues from research and drug regulation to care and human rights. On the second day, ministers discussed how to collectively move the global dementia agenda forward.

The conference was supported by the Department of Health of the United Kingdom of Great Britain and Northern Ireland, and the Organization for Economic Cooperation and Development (OECD).

The recorded webcast from the two days of the event is available here and at the link below.

The major outcome of the conference is that WHO member states have agreed to support a formal Call for Action setting out the intent to tackle dementia on an international scale and provide global leadership. The Call for Action was adopted by most of the countries that attended the conference. You can read the Call for Action on the WHO site.

WHO Director-General, Dr. Margaret Chan said

“We have been running behind the curve with dementia for a long time, but several recent events tell us that we are catching up. We must weave these multiple new initiatives into a comprehensive plan that can work in all countries. Government commitment will be key.”