Overview
Huntington’s disease (HD) is an autosomal dominant neurodegenerative disorder caused by a CAG expansion in huntingtin gene on chromosome 4. It is a progressive and devastating disease with a global overall prevalence of 2.71 per 100,000. HD affects middle-aged individuals, manifested by motor, psychiatric and cognitive manifestations. The disease duration is 15-20 years without available disease-modifying therapy. There is a lack of awareness about HD in the Arab region. There is little knowledge in Arabic speaking countries, with a limited number of specialists who can provide support. This is reflected in the affected families who experience caregivers’ distress, difficulty dealing with the condition, low quality of care for affected members, with disrupted family relations and even social isolation.
Project Details
The aim of our work is to tailor an online educational course to provide accurate, culturally valid information in Arabic for patients and caregivers in Arabic speaking countries, that can help them cope with the disease and manage its consequences. The course will be co-designed with the stakeholders together with experts and will be provided massively online in modular form. The content is expected to address all aspects of HD disease. Then we will test the feasibility, acceptability and user satisfaction, and evaluate the course for further development and final release as a free online educational program in Arabic. Improving the care of patients impacted by the disease in our region and raise awareness about the disease among the public who will also join the course.
Members involved
Featured Collaborators
