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International research consortia and networks

PredictND

PredicND was a four-year, €4.2m European project funded by the EU’s 7th Framework Programme that drew to a close in 2018. It focused on developing tools and means for earlier, evidence-based diagnosis of a range of neurodegenerative diseases. PredictND was coordinated by VTT Technical Research Centre of Finland Ltd. (Finland) and the consortium members included Alzheimer Europe (Luxembourg), Combinostics Ltd. (Finland), GE Healthcare (UK, Sweden), Imperial College of London (UK), Rigshospitalet (Denmark), Università degli Studi di Perugia (Italy), University of Eastern Finland (Finland) and VU/VUmc (the Netherlands). The collaboration is still very productive and continues to publish data from the project.

BrainStem – Stem Cell Center of Excellence in Neurology

BrainStem – Stem Cell Center of Excellence in Neurology is supported by Innovation Fund Denmark. The project coordinator is Professor Poul Hyttel, University of Copenhagen and its primary partners are the University of Copenhagen, DDRC at Rigshospitalet, University of Southern Denmark, Aarhus University, Bioneer, Lundbeck A/S (Denmark), Lund University (Sweden) and Innovative Concepts in Drug Development (France). Advanced stem cell technologies are used to re-programme skin cells from patients with AD and Parkinson’s disease to diseased neurons to study the underlying molecular mechanisms with the perspective to develop better diagnostics and to test new drugs.

Frontotemporal Dementia Research in Jutland Association (FReJA)

FReJA is an international multidisciplinary consortium established more than two decades ago to investigate a unique, large FTD-3 family in western Jutland. Basic and clinical scientists in Denmark, Sweden and the UK have made major progress over the years in identifying the disease gene and in understanding the disease mechanisms and their wider relevance for neurodegeneration in general.

European Alzheimer’s Disease Consortium (EADC)

EADC is a network of more than 50 European academic centres of excellence working in the field of AD and other dementias. It provides a forum for expanding scientific understanding and development of ways to prevent, delay, slow or ameliorate the primary and secondary symptoms of AD. The European Commission provided initial funding for EADC and supports working towards standardisation of diagnostic criteria, assessment tools and data collection methods, with a view to a subsequent trial period involving the testing and practical application of the tools agreed upon. The only Danish EADC member, DDRC has contributed to or directed studies on assessment tools, health economics, biomarkers and cross-cultural aspects of dementia care. In 2018 DDRC proposed an initiative focusing on the challenges of early diagnosis in neurodegenerative diseases. This includes a survey of EADC centres on the practice of diagnostic disclosure, biomarker counselling, treatment and follow-up of MCI patients as well as a position paper on the topic.

Interdem

DDRC takes part in Interdem, a pan-European network of researchers collaborating on research and dissemination of early, timely and quality psychosocial interventions aimed at improving the quality of life across Europe for people with dementia and their caregivers. Members of the network include academic and clinical researchers from 23 nations.

Nordic Network in Dementia Diagnostics (NIDD)

NIDD is funded by the Nordic Council and comprises eight academic memory clinics in the Nordic countries and Lithuania. As the name indicates, the main objective of the network is to examine various aspects of diagnostic procedures in dementia. One ongoing project involves evaluating quantitative EEG in Dementia diagnostics. DDRC and the memory clinic at Roskilde Hospital are the network’s Danish partners.

European Huntington’s Disease Network (EHDN) and Enroll HD

DDRC is part of EHDN, which provides a platform for professionals and people with HD and their relatives to facilitate collaboration throughout Europe. DDRC’s staff and families affected by HD have contributed significantly to clinical cohort studies and intervention studies. Enroll HD, initiated in 2012, is the world’s largest observational study for HD families. Designed as a clinical research platform, it will enable health care professionals, scientists and families affected by HD to work together towards an improved understanding of HD and better care and treatments. At the close of 2018, DDRC’s Enroll
HD cohort comprised 232 participants.

National dementia research and education centres in Scandinavia

Norway, Sweden and Denmark have national non-profit dementia research and education centres commissioned and funded by the national boards or ministries of health. DDRC, the Norwegian Centre for Dementia Research and the Swedish Dementia Centre collaborate and meet annually to share ideas and exchange programmes for the benefit of professional care staff, persons with dementia and family caregivers throughout Scandinavia.

Every other year DDRC organises a two-day leadership conference on care in collaboration with the Norwegian and Swedish national research and education centres. In 2018 DDRC hosted the conference, which had 247 participants, in Copenhagen. The theme this year was: Good dementia care is a matter of leadership: How do we maintain a person-centred approach as the disease progresses?

North Sea Dementia Group

The North Sea Dementia Group is an association of interested individuals from dementia care practice and research. DDRC hosted the annual meeting of the North Sea Dementia Group 2018 in Copenhagen, where 25 participants from eight European countries gave presentations on themes such as quality of care in hospitals, interventions and research for people with dementia, prevention, and dementia, media and technology.

Joint Programming on Neurodegenerative Diseases (JPND)

Funded by Horizon 2020 and EU member states, JPND is an innovative collaborative research initiative established to tackle neurodegenerative diseases. DDRC has taken part in three JPND-funded research consortia on biomarkers in AD and Parkinson’s disease (BIOMARKAPD), on the definition of outcome measures in dementia and on the harmonisation of assessment methods. 

Updated at 03 May 2019