Periodic Report Summary 1 - TS-EUROTRAIN (Interdisciplinary training network for Tourette Syndrome; structuring European Training capacities for neurodevelopmental disorders.)
The focus of this Initial Training Network (ITN) is Gilles de la Tourette Syndrome (TS), an inherited neuropsychiatric disorder that provides an excellent paradigm for the study and training needs for neurodevelopmental disorders of childhood onset. TS is marked by multiple motor and vocal tics and high comorbidity rates with attention deficit hyperactivity disorder and obsessive compulsive disorder. Due to lack of education of medical professionals, educators, and the general public, TS is underdiagnosed and patients are severely discriminated against. Efforts to elucidate the etiology and pathophysiology of TS are fragmented across Europe and hampered by low statistical power. Standards of care are not uniform due to lack in structured training modules for this disorder. We have built a comprehensive interdisciplinary and intersectorial training program in the field of TS and related disorders, that will deliver the next generation of young researchers who will shape the field. Their research within this ITN will lead to discoveries that will ultimately provide new therapies and increase the quality of life for patients and their families. At the same time, their engagement to society will increase awareness about the disorder in a pan-European effort to promote childhood mental health across Europe.
The kick-off meeting of TS-EUROTRAIN was successfully held in Athens on November 6-7 2012, with the participation of all network Level 1 Partners as well as Associated Partners. The outline of the project was discussed as well as organizational issues of the Marie Curie ITN framework. The specific details of preparing for each individual ESR project were also discussed and an initial timeline for all training activities was put in place. Special attention was paid to ensuring coordination among the different projects so that larger goals can be achieved according to our foreseen plan. Engagement with patient groups is one of the key goals of our network so the meeting was also attended by a representative from the German Tourette Syndrome patient group, one of our Associated Partners who plays a central role in the design of outreach activities for our network. The TS-EUROTRAIN website (http://ts-eurotrain.eu) became available by December 2012 and it will be continuously updated to feature all information about the project in general as well as individual ESRs and announcements of our events. Events that are open to researchers from outside the network are being advertised very openly, through our website, as well as the website and mailing list of the European Society for the Study of Tourette Syndrome (chaired until 2014 by Dr. Peristera Paschou, who is also the coordinator of the ITN).
The recruitment phase of TS-EUROTRAIN began in December 2012 with broad publicity on the available positions, through multiple venues (eg TS-EUROTRAIN website, EURAXESS, Nature Jobs, local Institutional websites, society mailing lists, website of the European Society for the Study of Tourette Syndrome). Our initial plan included two waves of recruitment. The main issue we encountered was bureaucratic delays with visa processing and issuing work permits in the host countries, but this obstacle has now been overcome. By now, all ESRs are in place and projects are underway. Our 2013 and 2014 Annual Retreats of all Partners and ESRs as well as the Assembly of the Supervisory Board took place in Athens (April 25, 2013) and Paris (April 26, 2014), in conjunction with the 2013 and 2014 Annual Meetings of the European Society for the Study of Tourette Syndrome. All our ESRs presented their projects to a large scientific audience and were welcomed by the community. These meetings were also opportunities to monitor the recruitment process at all sites and plan the specific details of our Training Programme. Importantly, they allowed discussions on project integration and scientific collaboration among partners.Already the first four events for our Training Programme have been completed. The first training event for our ESRs was hosted by our partner in Ulm November 21-22, focused on complementary skills such as scientific writing. This was an excellent opportunity for our ESRs to meet for the first time and start coordinating their scientific and outreach activities, as well as elect a representative. An important outcome of this training meeting was the fact that the ESRs started networking as Marie Curie Fellows and elected their representative. They also started coordinating their public engagement activities. The participation of one of our associated partners, The German Tourette Patient Association was instrumental in that respect. Our ESRs have already undertaken important initiatives and the first issue of our newsletter was circulated to all members of the European Society for the Study of Tourette Syndrome in April. The second issue is about to be circulated shortly. The newsletter reached a broad audience of more than 500 researchers (ESSTS members) and is also publicly available at our website. It includes news and features about recent scientific developments, interviews with patients and patient groups and introductions and updates about our ESRs and the progress of their projects.
Our second training event was hosted by MHH and included a specialized workshop on Statistical Parametric Mapping for Neuroimaging. Our third training event was hosted in Paris, on April 25-26, 2014. This was a symposium on “The Neurobiology and Phenotype of Tourette Syndrome” and was also attended by researchers from outside our network. The fourth training event was hosted at Decode Genetics, one of our partner companies and gave our ESRs the opportunity to train in R programming. In conjunction with our Mid-Term Review Meeting, which took place in Alexandroupoli, in Greece we are also organised a mini-conference on the etiology of Tourette Syndrome (Genetics vs environment). This event was also open to researchers from outside the network, aiming to raise awareness about Tourette Syndrome among pediatricians in the area. More than 150 participants attended the successful event. In short, both the Training and Scientific Programme of our ITN is proceeding very smoothly. As the recruitment has recently been completed we are now entering the very exciting phase of implementing the individuals projects as well as our Training Programme and we expect that the most important achievements will derive from the coordination of the different ESRs and the interplay among the projects.
Already great progress has been achieved by our ERSs. One of the great strengths of this ITN is the high integration and the multidisciplinary nature of the projects involving genetics, epigenetics, neurology, biotechnology, psychiatry, computer science and statistics. Individual projects have been designed and are now being carried out so as to ensure a high scientific impact. For instance, our ESRs work on the analysis of large scale datasets aiming to identify the genetic background of Tourette Syndrome and related neurodevelopmental disorders. A meta-analysis of close to 2000 newly recruited samples will undoubtedly provide important insight into the genetic etiology of Tourette Syndome. Our ESRs are also developing novel algorithmic tools in order to interrogate the interaction among multiple genetic loci. Such methodologies promise to reveal novel aspects of the genetic architecture of neurodevelopmental disorders. Furthermore, results from neuroimaging studies carried out by our ESRs on patients with Tourette Syndrome and related disorders, in combination with genetic studies are also going to provide important clues to the neurobiology of the disorder and possibly lead to the identification of biological markers to aid the diagnosis and prediction of the onset of symptoms. The involvement of companies (Decode genetics, an expert in genetic and epigenetic analysis and BI PHARMA, one of the largest pharamaceutical companies around the world) plays a central role in all projects providing expertise and infrastructure to all ESRs.
The kick-off meeting of TS-EUROTRAIN was successfully held in Athens on November 6-7 2012, with the participation of all network Level 1 Partners as well as Associated Partners. The outline of the project was discussed as well as organizational issues of the Marie Curie ITN framework. The specific details of preparing for each individual ESR project were also discussed and an initial timeline for all training activities was put in place. Special attention was paid to ensuring coordination among the different projects so that larger goals can be achieved according to our foreseen plan. Engagement with patient groups is one of the key goals of our network so the meeting was also attended by a representative from the German Tourette Syndrome patient group, one of our Associated Partners who plays a central role in the design of outreach activities for our network. The TS-EUROTRAIN website (http://ts-eurotrain.eu) became available by December 2012 and it will be continuously updated to feature all information about the project in general as well as individual ESRs and announcements of our events. Events that are open to researchers from outside the network are being advertised very openly, through our website, as well as the website and mailing list of the European Society for the Study of Tourette Syndrome (chaired until 2014 by Dr. Peristera Paschou, who is also the coordinator of the ITN).
The recruitment phase of TS-EUROTRAIN began in December 2012 with broad publicity on the available positions, through multiple venues (eg TS-EUROTRAIN website, EURAXESS, Nature Jobs, local Institutional websites, society mailing lists, website of the European Society for the Study of Tourette Syndrome). Our initial plan included two waves of recruitment. The main issue we encountered was bureaucratic delays with visa processing and issuing work permits in the host countries, but this obstacle has now been overcome. By now, all ESRs are in place and projects are underway. Our 2013 and 2014 Annual Retreats of all Partners and ESRs as well as the Assembly of the Supervisory Board took place in Athens (April 25, 2013) and Paris (April 26, 2014), in conjunction with the 2013 and 2014 Annual Meetings of the European Society for the Study of Tourette Syndrome. All our ESRs presented their projects to a large scientific audience and were welcomed by the community. These meetings were also opportunities to monitor the recruitment process at all sites and plan the specific details of our Training Programme. Importantly, they allowed discussions on project integration and scientific collaboration among partners.Already the first four events for our Training Programme have been completed. The first training event for our ESRs was hosted by our partner in Ulm November 21-22, focused on complementary skills such as scientific writing. This was an excellent opportunity for our ESRs to meet for the first time and start coordinating their scientific and outreach activities, as well as elect a representative. An important outcome of this training meeting was the fact that the ESRs started networking as Marie Curie Fellows and elected their representative. They also started coordinating their public engagement activities. The participation of one of our associated partners, The German Tourette Patient Association was instrumental in that respect. Our ESRs have already undertaken important initiatives and the first issue of our newsletter was circulated to all members of the European Society for the Study of Tourette Syndrome in April. The second issue is about to be circulated shortly. The newsletter reached a broad audience of more than 500 researchers (ESSTS members) and is also publicly available at our website. It includes news and features about recent scientific developments, interviews with patients and patient groups and introductions and updates about our ESRs and the progress of their projects.
Our second training event was hosted by MHH and included a specialized workshop on Statistical Parametric Mapping for Neuroimaging. Our third training event was hosted in Paris, on April 25-26, 2014. This was a symposium on “The Neurobiology and Phenotype of Tourette Syndrome” and was also attended by researchers from outside our network. The fourth training event was hosted at Decode Genetics, one of our partner companies and gave our ESRs the opportunity to train in R programming. In conjunction with our Mid-Term Review Meeting, which took place in Alexandroupoli, in Greece we are also organised a mini-conference on the etiology of Tourette Syndrome (Genetics vs environment). This event was also open to researchers from outside the network, aiming to raise awareness about Tourette Syndrome among pediatricians in the area. More than 150 participants attended the successful event. In short, both the Training and Scientific Programme of our ITN is proceeding very smoothly. As the recruitment has recently been completed we are now entering the very exciting phase of implementing the individuals projects as well as our Training Programme and we expect that the most important achievements will derive from the coordination of the different ESRs and the interplay among the projects.
Already great progress has been achieved by our ERSs. One of the great strengths of this ITN is the high integration and the multidisciplinary nature of the projects involving genetics, epigenetics, neurology, biotechnology, psychiatry, computer science and statistics. Individual projects have been designed and are now being carried out so as to ensure a high scientific impact. For instance, our ESRs work on the analysis of large scale datasets aiming to identify the genetic background of Tourette Syndrome and related neurodevelopmental disorders. A meta-analysis of close to 2000 newly recruited samples will undoubtedly provide important insight into the genetic etiology of Tourette Syndome. Our ESRs are also developing novel algorithmic tools in order to interrogate the interaction among multiple genetic loci. Such methodologies promise to reveal novel aspects of the genetic architecture of neurodevelopmental disorders. Furthermore, results from neuroimaging studies carried out by our ESRs on patients with Tourette Syndrome and related disorders, in combination with genetic studies are also going to provide important clues to the neurobiology of the disorder and possibly lead to the identification of biological markers to aid the diagnosis and prediction of the onset of symptoms. The involvement of companies (Decode genetics, an expert in genetic and epigenetic analysis and BI PHARMA, one of the largest pharamaceutical companies around the world) plays a central role in all projects providing expertise and infrastructure to all ESRs.