HealthE-RND

HealthE-RND: Advancing E-Health for Huntington’s Disease and Beyond

The NDN, along with NHS Lothian Huntington’s service, are involved in recruitment to module 1 of the international HealthE-RND study. HealthE-RND is a three-year pilot project aimed at improving access to multidisciplinary care for people affected by Huntington’s disease (HD) through a multilingual e-health platform.
Conducted across six European countries—the Czech Republic, Germany, Italy, Ireland, the Netherlands, and the UK—the project follows the principle that “knowledge must travel, not the patient,” ensuring specialist care is accessible regardless of location. Given the complex needs of HD patients and the scarcity of resources, the project seeks to bridge gaps by developing a digital model that could later be expanded to support other rare neurodegenerative diseases. Funded by the Joint Programme for Neurodegenerative Disease Research (JPND), the project brings together research institutions, Huntington centres, and patient organisations, coordinated by the European Huntington Association (EHA).

The project is being carried out in three phases: first, developing a new tool to assess quality of life and the impact of medical and social interventions on patients and caregivers; second, creating a multidisciplinary e-health platform in collaboration with The National Living Laboratory in the Netherlands, designed to support both patients and healthcare professionals with information, counselling, and digital health services; and third, evaluating the platform’s effectiveness through a clinical study comparing users of the platform with those receiving standard in-person care. By working closely with patients and families, HealthE-RND aims to ensure its digital healthcare model meets real needs, enhances access to expert care, and improves overall quality of life for those affected by Huntington’s disease.