Open Science & Data

demresearch1000x400

Actions that aim to: enable open access to knowledge and data, facilitate the sharing of knowledge across organisations, sectors or nations; or improve the use of data. Including but not limited to:

  • Developing or adopting best practice around open science and data.
  • Sharing Data and Knowledge and overall support for global efforts and knowledge transfer between countries.
  • Innovating in techniques and analysis.
  • Supporting the development of new approaches to treatments, and care and risk reduction through shared data and knowledge.
COMMITMENTS
Country / Organisation Pledge
Canada OECD supported discussions to link big data initiatives on population/healthcare data between UK and the Dementia Platform (UK) and CCNA (Canada) US-Canada linkage between two major initiatives (GAAIN/LORIS) to provide a wealth of open-source biomedical data for the community.
Germany EinBlickDemenz
“EinBlickDemenz”As part of the “Local Alliance for People with Dementia” that was initiated by the German Alzheimer Association and that has been supported by the German Federal Government, the novel project “EinBlickDemenz” was launched in autumn 2014. Within the project scientific findings in dementia research are written in easy-to-understand language and made available to the public. New articles are added to this “knowledge portal” on a weekly basis. Everybody is invited to comment on these articles. In this way Alzheimer’s patients and their relatives as well as other interested parties gain access to the latest findings and can better assess current dementia-related topics which are discussed in the media.
The project “EinBlickDemenz” is realized in cooperation with the Munich Cluster for Systems Neurology (SyNergy) and the German Center for Neurodegenerative Diseases (DZNE) and is open to everybody in order to access and comment dementia-related articles and topics. “EinBlickDemenz” is funded by the “Local Alliance for People with Dementia” for the period between 2014-2016.
Mexico Mexico has been working over the last decade to gather a generation of epidemiological dementia data from several cohorts and national representative studies.
Sweden Open comparisons
The aim is to stimulate comparisons and contribute to a greater openness concerning results and costs for the activities that are run by municipalities and county councils. The starting point is that systematic and open comparisons constitute a good way of simulating an increased efficiency and strengthening the control of the activities.Swedish Dementia register (SveDem)
The aim of the registry is to improve quality of diagnostics, treatment and care of patients with dementia disorders. Results from each unit can at all times be compared with regional and national data, which is an important tool for improving the quality of care at the local level. 98% of all memory clinics in Sweden are currently participating in SveDem.Swedish Dementia Centre
The Swedish Dementia Centre was established in 2008 as a hub of a national network for research and development units. The commission is to collect structure and disseminate knowledge about dementia and dementia care, compile evaluations and research results. One important function is to facilitate translation of research and implementation of new knowledge into nursing and care, interventions and social policy and useful tools for daily work.
United Kingdom Support the development of a Citizen Science project, which will crowd source new knowledge about by dementia by bringing together researchers and people with dementia, their families and carers. Participants will be able to join in with simple and engaging research projects that will help understand whether certain activities improve their lives. Researchers will use the data collected by participants to identify the changes that bring the greatest improvements for people with dementia. And findings from research will be shared online, so that everyone in the dementia community can benefit each time more is learned a new way to improve care.
Alzheimer’s Association Federated model of data sharing (GAAIN).

Explore funding mechanisms to accelerate data sharing of research teams around the world.

Alzheimer’s Disease International (ADI) ADI review of global prevalence, incidence and cost of dementia, World Alzheimer Report by September 2015.
Alzheimer’s and Related Disorders Society of India (ARDSI) ARDSI has enumerated exhaustive prevalence data (4.4 million people affected by 2015) with yearly predictions and has brought out a Dementia India Report (2010). This shall be periodically updated and used for concerted advocacy with the global strength enabled through this movement.
Alzheimer’s Research UK Alzheimer’s Research UK Network
The Alzheimer’s Research UK Research Network is a unique initiative of 15 virtual centres of scientific excellence that unites more than 700 dementia researchers from across the UK. The network provides support and streamlines dementia research, by enhancing research partnerships and resource-sharing, helping us to make progress faster.
The Alzheimer Society of Ireland (ASI) The ASI will play an important role in monitoring the implementation of Ireland’s National Dementia Strategy and the development of a follow-up strategy based on a review of the current strategy. It is vital that people with dementia and carers are involved in this process. The Chairperson of the Irish Dementia Working Group and a member of the Dementia Carers Campaign Network have been appointed to the NDS monitoring group and the ASI will continue to support them in these roles. This is planned for the 2015 to 2018.
Centre for Ageing and Development Research in Ireland (CARDI) CARDI Commissioned Research: A review of dementia data, research and policy in Ireland, Due for completion May 2015.
The Global CEO Initiative on Alzheimer’s Disease Big Data Alzheimer’s Research Agenda
Bring new open science tools to the fight and leverage technological innovation in big data techniques to advance Alzheimer’s disease research, patient engagement, and care delivery. In 2015, we have already launched a partnership between CEOi and Optum Labs to launch big data research projects to improve understanding of disease progression, gain insights into prediction and define optimal care models.
The Irish Network for Research in Dementia and Neurodegeneration (IRNDND). The IRNDND aims to increase knowledge sharing and facilitate the development of linkages and cooperative working relationships between Irish academics working across universities and disciplines (including basic, clinical and social sciences). It aims to increase awareness of the importance of research in dementia and ND among the general public as well as in statutory, private and philanthropic organisations and strengthen and expand the cohort of individuals with research expertise in the area of dementia. This started in 2012 and is ongoing.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s