The purpose of a working group is to develop the expanding knowledge base in HD necessary to address key clinical research issues that are of the greatest therapeutic relevance, so as to develop appropriate research methods and generate pilot data for the clinical trials of the next decade. Six working groups have been established by members of the HSG with expertise and interest in specific areas of research (Behavioral Aspects of HD Working Group, Biomarkers Working Group, Clinical Correlates Working Group, Clinical Trials Initiatives Working Group, Genetic Correlates Working Group, Neuropsychology Working Group).
Behavioral Aspects of HD Working Group
Karen Anderson, MD; Chair
Mark Groves, MD; Co-Chair
The Behavioral Aspects of HD Working Group is interested in the behavioral manifestations and complications of HD, including depression, irritability, and aggression. This working group is currently analyzing the behavioral elements of the UHDRS database and is planning therapeutic trials to evaluate symptomatic treatments for aggression in HD.
Related Link: EHDN Working Group - Behavioural Phenotype Working Group
Biomarkers Working Group
Steve Hersch, MD, PhD; Chair
The Biomarkers Working Group is interested in promoting the development of specific biomarkers useful for clinical trials in premanifest or manifest HD. The working group will coordinate with HSG, EHDN/EURO-HD and other groups performing biomarker research to help facilitate biomarker research and use by providing a forum for education, discussion, promotion, and sharing; an incubator for new research; and an interface for HSG investigators and sponsors seeking to do biomarker research or to use them.
Related Link: EHDN Working Group - Biomarkers Working Group
Clinical Correlates Working Group
Karen Marder, MD; Chair
Richard Myers, PhD; Co-Chair
The Clinical Correlates Working Group is working to provide accessible data and analytic resources to HSG members as well as other researchers. To help facilitate future research, work is being proposed to create a database compilation of existing HSG studies containing a subset of commonly utilized variables, providing an existing merged database available for research requests. The group is also developing a process by which researchers can submit proposals to analyze existing HSG databases as well as utilize available analytic resources. In addition, the group is working to identify the feasibility of linking HSG studies across time, particularly the UHDRS99 and pre 1999 UHDRS data, providing an invaluable resource for longitudinal data of HSG study participants.
Clinical Trials Initiatives Working Group
Andy Feigin, MD; Chair
Madaline Harrison, MD; Co-Chair
This group focuses on helping individual centers develop new therapeutic protocols for Huntington disease. These protocols may be trials evaluating the effects of new therapies on improving symptoms or for slowing progression of Huntington disease. Individual investigators are encouraged to explore innovations in trial design and funding. Particularly promising studies will be screened by the HSG Executive Committee to see if multi-center expansion is in order. Members of the group serve as advisors for those with projects in development and as potential investigators or co-investigators for new ideas brought to the group from basic scientists or other interested parties.
Related Links: EHDN Working Groups - Neuroprotective Therapy Working Group and Symptomatic Research and Therapy Working Group
Genetic Correlates Working Group
James Gusella, PhD; Chair
Marcy MacDonald, PhD; Co-Chair
Richard Myers, PhD; Co-Chair
This working group is interested in defining the genetic correlates of HD with specific attention to the genetic factors that account for the age of onset of HD and the pattern of clinical features and course. A study is underway to perform genetic linkage analysis in affected HD sibling pairs to help identify modifying genes important in the onset and progression of HD.
Related Link: EHDN Working Group - Genetic Modifiers Working Group
Neuropsychology Working Group
David Tupper, PhD, Chair
The Neuropsychology Working Group was established with the inception of the HSG and consists of clinical and research neuropsychologists from HSG sites. The goals of the group are to support HSG sites and HSG studies by: 1) providing recommendations regarding cognitive assessment methods; 2) providing consultation regarding cognitive data analysis and interpretation for HSG studies; 3) establishing normative data bases that may aid study sites in broadening their use of cognitive data collected from the UHDRS; and, 4) supporting the HD research efforts of our members through mentoring, collaboration, and consultation.
Related Link: EHDN Working Group - Cognitive Phenotype Working Group