Down Syndrome and Other Genetic Developmental Disorders Network

Mission statement/aims

Down syndrome (DS), the most frequent genetic cause of intellectual disability, affects more than 5 million people worldwide. DS impacts central nervous system development, impairing cognition, and behavior. While improved care of individuals with DS has significantly increased their life expectancy (55 years), it has led to highly frequent dementia. Indeed by the age of 30, most DS individuals have amyloid plaques and neurofibrillary tangles and it is expected that 75% of DS subjects will develop dementia. The genetic basis for the morphological and cognitive changes in DS has been associated with overexpression of human chromosome 21 (Hsa21) genes.
Over the past decade research in neuropsychopharmacology has made tremendous progress, identifying several targets for improving cognitive deficits in DS. The European Community has been very strong at initiating clinical trials by supporting solid preclinical data in mouse models of DS. Much more is expected to happen in Europe particularly on treatments of children and adolescents and also prenatal treatments.

There is no European research consortium currently ongoing. The last FP7 project AnEUploidy ended in 2011. Last spring 2014 we initiated the first non-profit scientific organization of researchers studying DS, founded to promote basic and applied research on DS, stimulate translational research and apply new scientific knowledge to develop improved treatments and cures. This society has now more than 100 members worldwide. The aims of this society are clearly different from the aims of DSID ECNP network. T21RS is an international organization not devoted to apply for European funding or create European consortia.

The European centers participating to the research on DS are centers of excellence and wish to be part of this new DSID ECNP network sharing common goals:

  • To identify pharmacological targets to treat intellectual disabilities, particularly DS, from prenatal stages to the old age.
  • To identify experimental models for other intellectual disabilities to test pharmacological targets of DS.
  • To foster translational, clinical and pharmaceutical research on DS and other intellectual disabilities.

The aims of the DSID network will be:

  • To apply for funding of collaborative research: Horizon2020, IMI (Innovative Medicine Initiative), ITN (Innovative Training Network) including collaborative European Training Networks (ETN), European Industrial Doctorates (EID) or European Joint Doctorates (EJD).
  • To participate in the organization of the biannual international meeting of the Trisomy 21 Research Society (www.t21rs.org). 

History

Children with neurodevelopmental disorders exhibit a significant deviation of neurobiological mechanisms governing normal brain and behavioral development. Despite the heterogeneity of genetic and environmental etiologies, neurodevelopmental disorders share common mechanisms and common targets for improving neuronal deficits have been identified. The DSG2D network aims to promote basic and applied research, stimulate translational research, apply new scientific knowledge to develop improved treatments and cures, and create European consortia to apply for European funding. DSG2D has 14 members from 7 European countries.