Book chapter
Chapter 2 - Revolutionizing clinical research and communication in Huntington's disease: The Huntington's disease integrated staging system (HD-ISS)
Huntington’s Disease, pp.41-56
Academic Press
2024
DOI: 10.1016/B978-0-323-95672-7.00008-X
Abstract
This chapter focuses on the importance of conducting effective clinical research studies in Huntington's disease (HD) and the historical challenges researchers faced in selecting study populations throughout the entire disease course. To address these challenges, this chapter presents the newly published Huntington's Disease Integrated Staging System (HD-ISS) and provides a summary of its development and practical applications. The HD-ISS is an evidence-based research framework that includes a biologic case definition of HD and a comprehensive staging system that describes the full progression of the disease over the entire lifetime of a person with HD. The biggest advantage of this system is the ability to consistently identify and classify individuals prior to clinical diagnosis, which has been a gap in HD research. This chapter also explains how enrichment techniques can be utilized within the framework of the HD-ISS and demonstrates its usage in real-world clinical trial scenarios. Finally, this chapter highlights the impact of the HD-ISS on patients and their families, including the exciting possibility of planning interventional trials earlier in the course of HD with the hope of delaying or preventing the clinical syndrome.
Details
- Title: Subtitle
- Chapter 2 - Revolutionizing clinical research and communication in Huntington's disease: The Huntington's disease integrated staging system (HD-ISS)
- Creators
- Cristina Sampaio - CHDI FoundationJeffrey D. Long - University of IowaAlexandra Mansbach - ABS ConsultingSarah J. Tabrizi - University College LondonEmily C. Gantman - CHDI Foundation
- Resource Type
- Book chapter
- Publication Details
- Huntington’s Disease, pp.41-56
- DOI
- 10.1016/B978-0-323-95672-7.00008-X
- Publisher
- Academic Press; United Kingdom
- Language
- English
- Date published
- 2024
- Academic Unit
- Psychiatry; Biostatistics
- Record Identifier
- 9984958289902771
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