L01 Global site and investigator database (GSID-HD): a new tool to promote research collaboration and manage efficient clinical trials in Huntington's disease. (16th November 2010)

• Record Type: Journal Article
• Authors: Giuliano, J; Kim, T; Shun, J; van Kammen, D P
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 81(2010)Supplement 1
• Page Start: A47
• Page End: A47
• Publication Date: 2010-11-16
• Subjects: patient recruitment -- clinical trials -- site database; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp.2010.222687.1
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: A global comprehensive database of sites and investigators does not exist. The Huntington Study Group (HSG) has a database of member sites and the European HD Network (EHDN) maintains site dossiers but there is no global database that contains a comprehensive set of data on site capabilities and contact information that is accessible by other researchers or interested sponsors. Aims: To provide the Huntington's disease (HD) Research Community with an interactive tool that will promote the sharing of information relating to clinical sites and investigators across the globe - North America, Latin America, Europe, Australia, Africa and Asia. Methods: Develop an internet based tool that will promote and facilitate the matching of sites and investigators with other investigators and potential sponsors with the goal of developing therapies for HD. In addition, working with the HD community to match site locations with patients and families to promote an efficient recruitment process and ease of access for patients wishing to participate in clinical trials. Results: 29 centres are registered in the GSID. Conclusions: As an HD Research Community, we all share the same goal to develop treatments for HD as rapidly as possible. This sense of urgency in achieving this goal is palpable. The GSID-HD is another tool that will allow the HD research community and sponsors to be more efficient and effective in planning and executing translational research projects and clinical trials.