Mental Health is one of today’s great challenges. For the young generations, the Neurodevelopmental disorders (NDD) are some of the most common, but also the most difficult. Together, NDD affect 1 in 25 people and span a wide range of conditions from learning difficulties and autism in childhood to schizophrenia in early adulthood but are united by an overlapping biology that arises from disrupted brain development. Currently there are no cures and as they last a lifetime put enormous pressure on healthcare systems, the economy and society.
There is a strong genetic component to the risk of developing an NDD, and this offers a route to understanding the causes, treatments and better diagnosis. For most people however genetic risk is due to the accumulation of many risk genes with only a weak effect, and this makes it difficult to determine how these changes alter brain development and function. A solution is to study individuals who carry a much stronger genetic risk due to deletions and duplications of DNA segments, know as Copy Number Variants or CNV. As the effects of CNV are stronger their associated psychiatric effects are more pronounced and so it is easier to establish a direct link between a particular gene and its actions. Unfortunately, these NDD patients with informative CNV are rare.
To take on this challenge, a European COST Action MINDDS (Maximising Research Impact in Neurodevelopmental Disorders) was formed to enhance the identification and study of patients with rare NDD patients for these pathogenic CNV. @MinddsAction is a pan-European research network of clinical scientists, preclinical researchers from both public and industrial centers and patient representatives, and will build the international collaboration needed to have a significant impact on understanding and treatment of NDD.
Prof Adrian Harwood the Action Chair believes that “With today’s advances in genetic, biological and medical research, the time is right to tackle this major challenge. But it will only be possible if we cooperate across the whole of Europe.”
The first @MinddsAction Workshop was held in Belgrade, Serbia at the beginning of March, and included participants from its membership of 24 European countries. The Workshop begun with a focus on three major objectives: improved identification and assessment of NDD patients; standardization of research methods and technologies for studying patients; and creation of an overarching online resource for sharing information – a knowledge nexus which will include a European registry for NDD patients; a research database for active researchers and an information service for clinicians, patients, care providers and parents. During the next four years, scientists gathered around MINDDS will combine their expertise and state-of-the-art knowledge to create a world leading European research community for the advancement of NDD research.
“As an early career researcher, I am excited about the knowledge that we are going to have at the end of the MINDDS project. That knowledge will be of great importance to the scientific community and I can only imagine the road that the MINDDS is going to take us!” says Sara Medved.