<< Background >>Over the last 20 years, genetic tests have gained importance in personalized medicine and disease prevention especially to healthy individuals who have a family history of disease or patients who may have a disease resulting from a genetic mutation (Klein, 2020). At-risk relatives of the 30 million Europeans affected by genetic conditions may be neither recognised nor managed appropriately due to the lack of knowledge about genetics and the few trained health care professionals (HCP) (McAllister et al, 2015). This contravenes the EU’s aim and the European Society of Human Genetics’s goals to create safe, efficient, patient-centered and sustainable healthcare systems (European commission Innovation Union, 2011). On the other hand, research has demonstrated that genetic testing for Neurodegenerative Disorders (ND) for asymptomatic relatives of people with neurodegenerative disorders (PwND) for specific genes and mutations can be valuable and safe in certain contexts. However, individuals’ understandings about what genetic susceptibility tests can achieve, what they cannot achieve, and the risks they pose should be more realistic after testing than beforehand (Christensen, et al, 2018). A lot of studies have shown that genetic testing increases risks for psychological harm, even among individuals who are at risk or positive for risk genes of ND, may elicit grief, distress, conflict, sadness, relief, guilt, uncertainty and ambivalence and that depends on the way that HCP disclose the genetic information (Rostamzadeh, et al, 2019). Nevertheless, when well informative and supported Genetic Counseling (GC) sessions take place, the genetic information can cause behavioral, day life changes (diet, vitamins/medications, physical activity) and enhance decision making that can work as predictive measures for the diseases. Nowadays, because of the lack of trainings on GC on ND, few HCP are prepared to address the genetic risks and to manage the psychological impact of the disclosure to relatives (Manrique de Lara et al, 2018). Given the increased incidence of ND, the availability of Direct to Consumer Testing and the development of precision medicine, an increased demand for high-quality information on ND genetics likely provided in the form of GC by well-trained health care professionals (HCP), is anticipated. All these global trends and challenges of genetic testing affect Higher Education Institutions (HEI)’s and their departments in the field of health as they aim to equip their students to become societal involved, well-educated HCPs. There is a crucial need to use the existing knowledge and experiences from a variety of disciplines in the field of genetics to build an innovative learning method and course which will include the best practice guidelines on how future HCP need to implement GC, which is the most appropriate method to introduce genetic testing to patients and people at genetic risk. The main aim and central impact of this project are to support people and society to better understand the aims of genetic testing and the usefulness of genetic counseling by involving students in an innovative learning and teaching setting. This project will provide the opportunity to take all the factors of an appropriate training course to society into account by involving the families of PwND in the development of the learning and teaching outcomes consequently improving their visibility and enhancing their level of knowledge.<< Objectives >>- Developing the “Best Genetic Counseling protocol” and specific Methodological Guidelines which will combine a huge number of similar European protocols. -Creating an innovative European Course which will be available on a Service System that can be easy integrated into HEI’s platforms.- Developing a Course that will combine online and classroom methods to prepare and learn students about the different facets of GC and how to offer GC services in the best possible way. -Students will gain new competencies and knowledge and bring new skills into practice related to communication, empathy, and support, while they make contact with families of PwND and offer GC services.-Supporting families of PwND by offering them a GC innovative approach which will combine knowledge enhancement and more person-centered process with the establishment of genetic knowledge, decision making and psychological support.- Enhancing genetic literacy and understanding of the general public as well as behavioral and day life changes (diet, vitamins, physical activity) that can work as predictive measures for ND. -Contributing on the goals of an effective and safe GC approach by combing a common, safe and efficient protocol with the new knowledge and skills of young health care professionals (students)-Enhancing interconnected care/medicine and establishing a multidisciplinary approach by the contribution of a critical mass of experts and health care professionals.-Setting the framework for the establishment of training and knowledge exchange.-Enhancing scientific and clinical careers in neurodegenerative GC in the future. -Translating genetics into improved health outcomes and benefits for families.-Trialing and implementation of a new model of GC in Europe.-Adapting the new GC intervention as a routine care service in European institutions and establishing the foundations for the integration of GC services across Europe.-Asking for the introduction of new policies and regulations supporting the introduction of GC Courses in HEIs and other institutions and the GC services where this is not present.-Empowering of families and young health professionals (students) to be actively involved participants of the genetically oriented society.-Enhancing and promoting the use of Telegenetics as part of remote GC services<< Implementation >>Project activities will follow a well-structured path and will be subsequent and interconnected, divided work packages (WP) and tasks with responsible partners who will lead the work and divide responsibilities among the partners. In each WP different tasks are described to facilitate the reaching of the outcomes. Leaders of each WP will monitor the progress within the WP and will be responsible for the timely delivery and quality assurance of PR The following WPs and activities have been defined: WP1 Management and Implementation –Leader: AUThWP2 Development of GC Methodology (PR1) –Leader: UHEIExperts in the field of GC (P.I.N.Dis and FFCRB) will share their existing GC protocols and partnership will create the final European Guidelines. A needs analysis, involving a large variety of participants from care and patient organizations (families of PwND), diagnostic institutions and genetic laboratories (HCPs) will be contacted in order to define their needs and the specifications of the protocol. The Transnational Implementation Guidelines including ¨Best GC Protocol” will be the final result of this WP.WP3 Development and design of the GECONEU course and material (PR2) – Leader: VUBBased on the specifications from WP2 and also a Cross-country comparison of the courses in partnerships universities, the GECONEU course and material will be developed and designed. Feedback from end-users from the Needs analysis study will be used for the creation of this WP. The PR will be the course material that will be used for the pilot (PR4).WP4 Design, Development and Testing of a Service System (PR3) – Leader: AUThBased on the specifications from WP2, the service system which will be included in the e-learning platform will be developed and designed. It will make it possible to combine online digital media with traditional classroom methods. With the service system and the e-learning platform, students not only have control over time, place, path, and pace, but it also allows for a combination of classroom practices with computing mediated activities regarding content and delivery. The PR of this WP will be the software of the learning platform that can be used for the pilot. WP5 Pilot (PR4) –Leader: IEUIt contains the tasks related to piloting the new and innovative course in 4 HEI’s and local care facilities. A group of students will take part in the course and perform the pilot. It will support the sustainability and replicability of the material and service system of the learning platform. A Learning Teaching Training Activity will be organised before the Pilot in order to train teachers in the GECONEU Course. WP6 Evaluation and monitoring of the project objectives and impact – Leader: FCRBThis WP monitors the progress of the project to meet the objectives on a continuous basis. Standardized measures, such as questionnaires, will be used to evaluate the acceptability of the course and the blended learning platform. This WP will be a comprehensive report that is the basis for further development in the project.WP7 Dissemination –Leader:P.I.N.DisThis WP concerns the ongoing dissemination of the project and the PRs at the local, national and EU level. Partners will continuously disseminate the ongoing and PRs at their local level and within their organizations. 5 Multiplier Events will be organised (one in each country) to spread the PR.<< Results >>The project is divided into different WPs with different PRs. These PRs lead to the following main 4 outcomes: ¨Best GC Protocol” in Europe (PR1)Experts in the field of GC will share their existing GC protocols and partnership will create the final European Guidelines. A needs analysis, involving a large variety of participants from care and patient organizations (families of PwND), diagnostic institutions and genetic laboratories (HCPs) will be contacted in order to define their needs and the specifications of the protocol. The Methodological Guide will be the final result.An innovative creative course (PR2 and PR4)The project will develop an innovative interactive course that can be part of the curriculum of HEI’s in Europe. This will be done by involving care organizations, families, HCPs in the field of neurology, genetics and psychology in a co-design process, bringing theory and practice together, and taking the workplace as a starting point for new course material in education. Service System for Universities' e-learning platforms (PR3)The training material of the course will be offered through a Backend-as-a-Service (SaaS), which will be able to integrate into any e-learning platforms, increasing the sustainability and impact of the results of the project, while promoting the competencies of students and giving them the possibility to exchange results internationally. Guideline hand book (PR4)Finally, the result will be a guideline handbook, that helps HEI’s across Europe to implement the training, the service system and the teaching material, supporting the impact, replicability and sustainability of GECONEU outcomes. This handbook will be set up based on extensive testing of the learning material and service system in pilots and experiences of 4 different faculties in 4 countries. The handbook will facilitate the implementation in HEIs throughout Europe. Based on these main objectives GECONEU aims to tackle the following impacts outcomes: - Students will become aware of GC related issues and problems. Their concept of the way to counsel will change through this learning method and they will be motivated to work in GC field. The social engagement of HEI’s is increased and students gain civic competences. - When students become HCP they will be able to apply the course content in their work. This method is beneficial for the job satisfaction of HCPs who practice GC. - Families’ fear, anxiety, distress and depression during the disclosure of genetic testing results and after will be decreased through the person-centered approach and the enhancement of health literacy. - Raising the awareness and knowledge of the public about genetic testing and its benefits and risks. Enhance decision-making in the field of health and genetics and increase public health literacy.- Young HCPs and families of PwND will be brought together in this GC approach, increasing the understanding of psychological needs and improving the communication conditions between families, caregivers and the medical supervisor. In this way, the social engagement of students and the link with the real world in clinical practice will be increased. - Evidence regarding the potential benefit and harms of genetic testing and counseling to inform medical practice and health policy.- Creation of EU networks, harmonization of training practices according to good practices shared. Partners and associated partners are about to establish communication channels for exchanging and developing existing successful for the students innovative methods and educational material.- Telegenetics services in the new service system will increase the accessibility of GC services and tackle the lack of GC services in Europe.- Provide information to design appropriate health programs that will reduce the ever-increasing burden of inherited diseases and improve the effectiveness of the national healthcare system.