Announcement
15.09.2011
The World Congress on Huntington's disease is held every two years and attracts a broad range of members from the Huntington's disease community, including healthcare professionals, research scientists and industry representatives, representatives from the major Huntington's disease organisations, as well as patients and their caregivers. This year, the congress took place in Melbourne, Australia, from 11-14 September and attracted more than 400 delegates from all over the world.
Supported by NeuroSearch, University of Lyon, France, has initiated the Global Huntington’s Disease Burden study (GHDB), which is the first international study of the socioeconomic burden of Huntington's disease. The following notable findings were presented at the congress:
- The direct medical costs (hospital visits, nursing home etc) associated with Huntington's disease in France amount to appox. EUR 24,000 per patient per year
- The Huntington's Quality of Life Index (H-QoL-I) has been validated cross-culturally with data from the United States, Germany, Poland, France and Italy
- A survey in Poland and Italy reported an average time spent by caregivers caring for a patient of more than 20 hours/day
- Among caregivers surveyed in the United States, 43% reported significant deterioration of their quality of life
The unique data emerging from the GHDB study provide insights into the grave consequences of Huntington's disease for patients, caregivers and society as a whole. These consequences range from many hours of daily care to direct expenses and loss of quality of life to significant productivity losses for those affected by this devastating hereditary disease.
These data highlight the need for further research into Huntington's disease, as well as the need to develop novel effective therapies.
"We are grateful for the support NeuroSearch provides in this project, which is the first of its kind in Huntington's disease. We believe that the international Huntington's disease community will be encouraged by the information emerging from the study, which should help ensure that patients and caregivers receive appropriate attention from healthcare policymakers and politicians," commented Professor Mondher Toumi, University Claude Bernard Lyon I.
The presentations can be found at the company's website via the following link:
http://neurosearch.com/Default.aspx?ID=8170&PID=47239&M=NewsV2&Action=1&NewsId=16099
Patrik Dahlen
CEO
Contact person:
René Schneider, EVP & CFO, telephone: +45 2911 2097
About NeuroSearch
NeuroSearch A/S is a European-based biopharmaceutical company listed on NASDAQ OMX Copenhagen A/S (NEUR) and specialising in central nervous system (CNS) disorders. The company consists of two independent businesses. Specialty Pharma is the company’s specialty pharma business focused on completing the development and marketing of Huntexil®, a unique drug in Phase III for the treatment of the motor symptoms of Huntington’s disease. NsDiscovery is managing the company’s early drug discovery and research, out-licensing of product candidates targeting non-specialist indications, and the company’s partnerships. The company has strategic research and development alliances with Janssen and Lilly as well as a licence agreement with Abbott.
