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Working Groups

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WG1 - Standardisation and harmonisation of clinical practices for GTS

• Documentation of GTS clinical practices across Europe

• Development of guidelines for GTS diagnosis, clinical assessment, and treatment

• Translation and validation of clinical instruments in partner countries that are now lacking such tools

• Short Term Scientific Missions

• Dissemination activities (in collaboration with WG4)

WG2 – Genetic studies of GTS / GTS etiology

• Documentation of biobanking efforts for GTS across Europe

• Development of common protocols for data and sample collection and sharing

• Creation of European biobank for GTS

• Open dialogue on ethical issues involved in biobanking

• Search for genetic susceptibility variants for GTS

• Elucidate interactions between environment and genetics

• Statistical analysis

• Short Term Scientific Missions (pre- and post-doctoral scientists)

• Dissemination activities (in collaboration with WG4)

• Preparation and submission of grant proposals

WG3 – Online database for the study of GTS

Design of online database /case registry

• Collection of epidemiological data for GTS (clinical assessment and exposure to environmental factors that may trigger the onset of GTS)

• Development of protocols to guarantee security, privacy, and anonymity of stored data

• Development of guidelines for data access and sharing

• Instigation of an open dialogue on ethical considerations regarding the collection of such data

• Preparation and submission of grant proposals to national, European, and international funding agencies

WG4 – Outreach activities

• Multilingual project website

• Weblogs targeting scientists as well as patients, families, and the general public

• International conference on the study of GTS and open day

• Lecture Series on GTS and related disorders

• Round tables in national, European, and international conferences

• Training workshops and training schools

• Distribution of educational material to educators and medical professionals.

• Commencement of dialogue with policy makers on public awareness for GTS

- continuous education of medical professionals

- training programmes for educators

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