The main objective of the GERAR project is the development and evaluation of innovative, integrated health services for patients with rare illnesses, supported by intelligent ICT and network solutions. The use case of patients with PAH AND CTEPH will be considered as a starting point and the results will undergo in-depth analysis in order to adapt the proposed solution to another four, rare, pneumological and neurological illnesses: diffuse interstitial pulmonary disease (DIPD), cystic fibrosis (CF), amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS).
The resulting GERAR platform will improve clinical management and quality of life for patients with rare illnesses, it will improve interaction between patients and healthcare professionals and between professionals, it will reduce the need for urgent hospital consultations and admissions, and it will reduce the costs of care for patients with rare illnesses. In the development of the solution, a patient-oriented approach will be followed and the patient will be the focus of the new model facilitated by the resulting platform. It will be the patient that will be established as the main manager of their own health within the framework of an innovative, self-control perspective. Additionally, the platform will provide tools to manage patient training and support in order to ensure their empowerment. To this end, a pedagogical model will be provided that will incorporate information relating to the illness as well as recommendations for first-level, household action.
For the development of the project a cooperation structure has been formed, which is made up of:
• Mobile Health Systems
• August Pi i Sunyer Biomedical Research Institute
• Barcelona Digital Technology Centre (Private Foundation) (now called Eurecat)