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International research consortia and networks

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 enables 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 end of 2019, DDRC’s Enroll HD cohort comprised 272 participants.

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 developing 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. DDRC, the only Danish EADC member, has contributed to or directed studies on assessment tools, health economics, biomarkers and cross-cultural aspects of dementia care. In 2019 we took the lead in launching a new project to develop a position paper on MCI.

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, funded by the Nordic Council, comprises eight academic memory clinics in the Nordic countries and Lithuania. 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 Zealand University Hospital Memory Clinic are the network’s Danish partners.

Nordic Research Network on Dementia and Ethnicity

The Nordic Research Network on Dementia and Ethnicity, established in 2014, comprises researchers with backgrounds in medicine, psychology, occupational therapy, nursing, speech therapy and linguistics who conduct research in dementia and minority ethnic groups. Members collaborate and meet twice annually to plan and share research. The network currently receives support from the Nordic Welfare Centre.

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 have exchange programmes for the benefit of professional care staff, people with dementia, and family caregivers throughout Scandinavia.

Updated at 25 June 2020