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 project that aims to make it easier for people with Huntington’s disease to get care from different health professionals by using a multilingual e-health platform.

The project is taking place in six European countries: the Czech Republic, Germany, Italy, Ireland, the Netherlands, and the UK. It follows the idea that “knowledge must travel, not the patient,” meaning people should be able to access expert care wherever they live. Because Huntington’s disease is a rare condition and there are not many services available, the study hopes to create a digital system that can also be used to help people with other rare brain diseases in the future.

The study has three main parts:
Module 1) Creating a new tool to measure quality of life and the effect of care and support on patients and their carers
Module 2) Building an online platform with help from The National Living Laboratory in the Netherlands. The platform will give patients and professionals access to information, support, and health services
Module 3) Testing how well the platform works by comparing it with standard face-to-face care in a clinical study

By working with patients and families, HealthE-RND wants to make sure the online system is useful, easy to access, and helps improve life for people with Huntington’s disease.