European eHealth care model for rare neurodegenerative diseases

Rare neurodegenerative disorders (RND) like Huntington?s Disease (HD) require multidisciplinary care teams which are in short supply. Given the devastating consequences of RNDs for the individual patient and their families there is an urgent need to develop innovative ways to ensure access to best practices and established care pathways, less constrained by the randomness of the place of residence of the patients. HEALTHE-RND strives to contribute to achieving the aspirational goal: ?not the patient has to travel, the knowledge does?. Our multi-national and multi-disciplinary consortium will harness the power of e-health care models for rare neurodegenerative diseases, will engage in the co-development of need based patient value (PV) assessments and will conduct an exploratory proof of concept study in HD serving as pilot project for e-health care interventions for RNDs. In module 1 we will develop for patients and companions/caregiver?s disease-specific, patient-centric assessments using the needs-based conceptual model aiming at valid, unidimensional indices of outcome allowing to assess the impact of social and educational services provided along with the impact of medical interventions and their side effects. In parallel, in module 2 we will develop, implement and test for feasibility a multidisciplinary, multilingual multicultural e-health care model. In module 3 we will then evaluate the impact and value of the e-health care model by conducting an exploratory proof of concept (POC), randomized controlled trial using needs-based PV measurements as the primary outcomes. Overall, the project is expected to provide a model for the improvement and optimization of existing health care strategies for RND across Europe and may hasten the development of new health care approaches.

Award Date
17 September 2018
Award Value
Principal Investigator
Dr Jennifer Hoblyn
Host Institution
Trinity College Dublin
Joint Programming Initiative in Neurodegenerative Diseases