HSG Working Groups are member-driven groups that are formed with HSG approval. Working Groups function according to guidelines and processes developed by HSG.
Working Groups provide opportunities for subject matter experts to study and report on specific topics and make recommendations or produce materials based on findings. Potential impacts of this work are vast and include developing new technologies, solving problems, and informing decision making.
Behavioral
Purpose: Members of the Behavioral Working Group are dedicated to working together to address needs of people with HD-related neuropsychiatric symptoms.
Chair: Dr. Karen Anderson
Current Projects: The Working Group plans to collaborate with EHDN for a series of remote meetings regarding Behavioral Symptom Management in Long-Term Care and Problem Behaviors Assessment Longitudinal Analyses.
Digital Biomarkers
Purpose: To identify, develop, and evaluate digital tools to provide more frequent and objective measures of HD in order to speed therapeutic development and enhance clinical care.
Co-Chairs: Dr. Jamie Adams & Dr. Lori Quinn
Current Projects: TBD
Genetics
Purpose: The genetics working group provides a forum to discuss and study the genetic aspects of HD, including (but limited to) 1) the relationship between CAG repeat expansion in HTT and other genes/genetic modifiers in determining the phenotype of HD or response to treatments; 2) assisting the HSG in developing the genetic aspects of its clinical trials; and 3) developing genetics-related research questions and designing studies to answer those questions.
Chair: Dr. Martha Nance
Co-Chair: Dr. Claudia Testa
Current Projects: TBD
Juvenile Onset HD
Purpose: The purpose is to work alongside other parties interested in JoHD to harmonize the approach to research in these patients.
Chair: Dr. Alexandra “Sasha” Duffy
Co-Chair: Dr. Martha Nance
Current Projects:
- Develop a JoHD-specific rating scale.
- Survey HD specialty programs and pediatric movement disorders specialists in North America to understand how many people with JoHD currently resident here, and how special issues like dystonia, pain, behavior, and seizures are currently being managed.
- Use its own content experts as well as outside experts to develop a “best practices” guideline for the management of JoHD. The JoHDWG will work with patient-facing organizations such as HDSA, HDYO, and Help4HD to ensure that these best practices are feasible to the families and are communicated in a way that they can reach patients and families wherever they are.
- Conduct a JoHD Symposium at the 2024 HSG meeting to discuss its best practices guidelines as well as outlining priority areas for optimizing clinical care and for areas of future research.
Neuropsychology
Purpose:
- Provide and update neuropsychological practice guidelines based on empirical evidence, including supporting development of improved neuropsychometric diagnostic tools, diagnosis of HD, & expanding recommendations and education to patients/families/service providers,
- Provide recommendations on best research practices in HD employing neuropsychometric methods
- Advocate for and enhance the role of neuropsychology in the interdisciplinary clinical care of patients with HD.
Overall, HSG NP WG will provide an opportunity to network, using both web-based communication and in-person contact, for all neuropsychologists working with patients and families affected by Huntington’s disease.
Chair: Dr. Kendra Anderson
Co-Chair: Dr. Maria “Agu” Rossetti
Current Projects:
- Quarterly Neuropsychology Newsletter
- HSG Survey of Neuropsychological Practice in HD Clinics – results presented at HSG Sacramento 2019
- “An exploratory pilot study of neuropsychological performance in two Huntington Disease Centers of Excellence Clinics” – accepted for publication in Archives of Neuropsychology
- “Huntington Study Group’s Neuropsychology Working Group Position on the Implementation of Non-Motor Diagnostic Criteria in Huntington Disease” – under review in Movement Disorders Clinical Practice
- “Huntington Study Group’s Neuropsychology Working Group Position on Best Practice Recommendations for the Clinical Neuropsychological Evaluation of Patients with Huntington Disease” – under review in The Clinical Neuropsychologist
Rehabilitation
Purpose: The rehabilitation therapists working group of the Huntington’s Study Group was formed in 2012 to create a forum for rehabilitation professionals to study and discuss rehabilitation therapies for individuals with Huntington’s disease. The group focuses on occupational, physical, and speech therapy for individuals with Huntington’s disease. The aim of the group is to provide leadership and guidance for optimal rehabilitation interventions for rehabilitation therapists.
Co-Chairs: Beth Gustafson, Lisa Muratori, Meredith Pauly
Current Projects:
- Rehab Professionals course at HSG 2024 annual meeting.
Facilitate coordination of care for persons with Huntington’s disease by assisting physicians and other prescribers in appropriate referrals to rehabilitation services for their patients with HD. Deliverable: One page pocket guides with guidance and information for neurologists/prescribers on referral for services from occupational, physical and speech therapy. The pocket guides were developed after the 2023 course and are now available in the Brainery. - Educate therapists on the current evidence-based rehabilitation of clients with HD. Deliverable: A CME4HD course consisting of multiple modules for therapists.
- Explore the needs of people with Huntington’s disease and their caregivers related to tracking their motor and non-motor symptoms over time. Better understand how persons with HD and their families would like to receive health information. Deliverables will be based on input from stakeholders through stakeholder meetings and survey.
Social Work
Purpose: The Social Work Working Group aims to create an opportunity for HD social work professionals to collaborate, to contribute to the HD and social work bodies of knowledge, to identify best clinical practices for social workers to support the HD Community, and to identify areas of HD care deficits and promising solutions.
Co-Chairs: Dr. Hope Heller & Amber McCarthy
Current Projects: TBD
FAQs
Q: How often do we need to meet?
A: This is at your discretion based on the needs and tasks of Working Group. We recommend that all groups meet at least once per year in addition to at the Clinical Research Congress.
Q: Who can start an HSG Working Group?
A: Any HSG member with subject matter expertise related to the subject of their project(s) can apply to start a new Working Group at HSG via the Working Group Application.
Q: Who can be on an HSG Working Group, and how are people selected?
A: Participation on HSG Working Groups is open to all HSG members. Any HSG member with expertise related to the subject of the Working Group and its projects is eligible to participate in a Working Group. Anyone interested in joining an existing HSG Working Group should contact the Chair/Co-Chair to discuss.
Q: How many people can be on a Working Group?
A: There is no minimum number of Working Groups members. Membership numbers are at the discretion of the Chairs.
Q: Who can Chair or Co-Chair a Working Group?
A: Working Group Chairs are typically self-appointed (if applying to start a new Working Group) or asked to take over Chair/Co-Chair responsibilities by a current Chair/Co-Chair.
Interested in forming a Working Group?
Want to start an HSG project or initiative?
Interested in joining an HSG Working Group?
Contact info@hsglimited.org for more information.