Alzheimer Europe sets out recommendations to improve data sharing in dementia research
(Press-News.org) Luxembourg, 23 February 2021 - At an online European Parliament workshop hosted by Deirdre Clune MEP (Ireland), Alzheimer Europe launched a new report "Data Sharing in Dementia Research", which reviews recent changes in EU research policy and sets out recommendations to improve data sharing in dementia research.
In this report, Alzheimer Europe evaluates the legal and policy landscapes that dementia researchers have had to navigate since the launch of Horizon 2020 in 2013. The report identifies key barriers and enablers for data sharing. It maps the Horizon 2020 dementia research portfolio, assessing the scale of EU investment in dementia research and the use of clinical research data. Finally, it reviews recent surveys of researchers, research participants and patients, collating their perceptions and concerns regarding data sharing.
To date, over EUR 570 million has been invested through Horizon 2020 in dementia research projects, many of which involve the use of clinical data
Although Open Access principles have been widely adopted, the uptake of Open Data practices varies between sectors and Member States
The General Data Protection Regulation (GDPR) has not yet fully delivered on its aim of facilitating research data sharing, due to a perceived lack of clarity and regulatory divergence between Member States
Researchers face technical, financial and motivational obstacles to data sharing, with the loss of privacy being the most frequently-cited concern for research participants.
Key recommendations to improve data sharing:
Developing pathways for faster, secure sharing of research data between sectors and across borders, including GDPR codes of conduct and standard contract clauses
Supporting researchers to maintain datasets and platforms after projects end, and embedding academic reward systems that place a greater value on data sharing and transparency
Increasing digital literacy in the general population, ensuring that older adults and vulnerable groups are not left behind
Involving people with dementia in the design and conduct of research, as well as in data governance.
Commenting on the launch of the report, Alzheimer Europe's Executive Director, Jean Georges, stated:
"The number of people with dementia in Europe is likely to double by 2050, increasing from 9.78 to 18.8 million in the wider European region. Unfortunately, research on dementia has historically received proportionately less funding than other disease areas. As a result, there is an urgent need to maximise the utility of data from dementia research. Data sharing represents an important step towards meeting this need, and could help increase our understanding of the causes, treatment, prevention and care of dementia. However, there is still much to do to improve data sharing in dementia research. To ensure people with dementia benefit from the progress made in recent years, we need to work together to overcome the remaining obstacles to data sharing, and maintain dementia research as a priority for EU research programmes."
To download (PDF):
For further information, contact:
Executive Director, Alzheimer Europe,
14, rue Dicks, L-1417 Luxembourg,
Tel.: +352-29 79 70,
Fax: +352-29 79 72,
Alzheimer Europe gratefully acknowledges the support of GatesVentures for its report on "Data sharing in dementia research - the EU landscape".
Notes to editors:
Alzheimer Europe is the umbrella organisation of national Alzheimer associations and currently has 39 member organisations in 35 European countries. The mission statement of the organisation is to change perceptions, practice and policy to ensure equal access of people with dementia to a high level of care services and treatment options.
To support people with dementia, carers and Alzheimer's associations during the COVID-19 pandemic, the organisation has dedicated a special section of its website to useful resources and links:
[Attachments] See images for this press release:
ELSE PRESS RELEASES FROM THIS DATE:
Helsinki, Finland--Technology helps humans maintain connections, get work done, and relax after a long day. How it can best improve the lives of animals, particularly those in captivity, however, has remained an open question.
Scientists from Aalto University, in collaboration with Korkeasaari Zoo, have designed and built an on-demand video device for white-faced saki monkeys to activate as and when they like. While enrichment systems for zoo animals have been around for some time, very few offer animals the ability to choose when and how they use the device, even though choice and control are known to promote animal welfare.
'We were very much interested in how we can give animals control over their ...
U.S. policies in the Middle East are built on outdated "legacy" aid packages, massive arms sales and a disproportionate focus on the Iranian threat that fail to advance American interests - or help the region's people - and need to be rethought, according to a new RAND Corporation report.
The United States devotes an overwhelming share of foreign military financing to just three countries - Israel, Egypt and Jordan, which received 81% of the $6 billion spent globally in 2019. If policymakers were to pursue an alternative strategy outlined by RAND researchers, ...
Graphene, a two-dimensional material composed exclusively of carbon, has revealed extraordinary properties, including thermal and electrical conductivity, transparency, and flexibility. When combined, these properties become particularly interesting in the age of touch screens and flexible electronics! 'Unlike 3D materials, graphene has a height reduced to the ultimate dimension of the atom. It's therefore a carbon atom plane,' explains Prof. Jean-Christophe Charlier, a specialist in nanoscopic physics at the Institute of Condensed Matter and Nanosciences of UCLouvain.
In a study published in Nature, the scientist and his team dissected the behaviour of electrons when two layers of graphene superimposed at an ...
Its muscular body shape and large pectoral fins are perfect for long-distance travel, yet movement patterns of the whitespotted eagle ray (Aetobatus narinari) remain a mystery. Researchers from Florida Atlantic University's Harbor Branch Oceanographic Institute in collaboration with Mote Marine Laboratory & Aquarium, the University of Florida and the Florida Fish and Wildlife Conservation Commission, are the first to conduct a multiyear study examining large-scale movements of whitespotted eagle rays in United States waters.
Between 2016 and 2018, scientists fitted 54 rays with acoustic transmitters ...
Doha, Qatar - (February 23, 2021) - A group of researchers at Qatar Foundation have reported the first and largest genetic association study in the Middle East, that has been published online in Nature Communications - a leading a peer-reviewed, open access, scientific journal published by Nature Research.
The study titled "Whole genome sequencing in the Middle Eastern Qatari population identifies genetic associations with 45 clinically relevant traits" highlights a vital piece of information wherein now there is a better understanding of the genetic risk factors that are specific to the Arab population, including those that are shared with other ethnicities.
Qatar was among the first countries to launch its own large-scale, national genome project. Qatar Genome ...
A recent genetic study at the University of Helsinki provides new information on the occurrence of a DVL2 gene defect associated with a screw tail and its relevance to canine constitution and health. The variant was found in several Bulldog and Pit Bull type breeds, and it was shown to result in caudal vertebral anomalies and shortening of the muzzle. The DLV2 variant may also affect the development of the heart.
Dog breeding is often focused on appearance. In some breeds, the ideal body shape is bulky, with a broad head and short muzzle, short legs and a very short and kinked tail, also known as a "screw tail". In a previous study in the United States, screw tail was linked to a variant in the DVL2 gene. The variant has become enriched ...
According to recent estimates, there will be roughly 10 billion people to feed in 2050. Agricultural production will need to increase by almost 56% to guarantee food security globally, without converting more land for agriculture (in line with environmental and climate targets). This unprecedented challenge has ushered in the era of "smart agriculture," which promises to revolutionize food production by combining agricultural techniques with information technology, automation, and artificial intelligence. This new era, called "Agriculture 4.0," could ensure sustainable food production for the entire world. However, as communities gradually embrace smart agriculture, it is important to understand how to manage the security and privacy risks associated with the integration of ...
Washington, DC / New Delhi, India - Researchers at CDDEP, in collaboration with leading experts in the field, have produced the "Infectious Diseases in the South-East Asia Region" report, which examines cross-boundary challenges in communicable disease control in countries in the South-and South-East Asia region. The report emphasizes infectious diseases related to other sources of disease burden in the region and communicates overall trends in the health and economic burden they impose.
Despite substantial progress in recent years, which has seen reductions in deaths from HIV and malaria and an increase ...
Researchers of the University of Helsinki have resolved for the first time, how the ultrafine particles of atmosphere effect on the climate and health.
Atmospheric air pollution kills more than 10,000 people every day. The biggest threat to human health has been assumed to be the mass accumulation of atmospheric particles with diameter smaller 2.5 μm: the higher the mass and loss of visibility, the bigger the threat.
The researchers of the Institute for Atmospheric and Earth System Research (INAR) at the University of Helsinki together with collaborators in China discovered that if we want to solve the accumulation of the biggest particles, we need to start with the smallest.
Until recent ...
A new study has for the first time explored the rate at which the world's largest fish, the endangered whale shark, can recover from its injuries. The findings reveal that lacerations and abrasions, increasingly caused through collisions with boats, can heal in a matter of weeks and researchers found evidence of partially removed dorsal fins re-growing.
This work, published in the journal Conservation Physiology, comes at a critical time for these large sharks, that can reach lengths of up to 18 metres. Other recent studies have shown that as their popularity within the wildlife tourism sector increases, so do interactions with humans and boat traffic. As a result, these ...
LAST 30 PRESS RELEASES:
[Press-News.org] Alzheimer Europe sets out recommendations to improve data sharing in dementia research