HD Treatment and Educational Resources

HD is a treatable disease, and HSG, its members, partners, sponsors and families are seeking more treatments that make a difference and improve the quality of life for individuals and families living with HD. To help health care providers better navigate caring for families with HD, HSG has compiled links to outside resources that may helpful. (Please see disclaimer below.)

Pharmacological Treatment of Chorea

This report includes treatment options for chorea based on expert opinion, as well as, an algorithm flow-chart pathway.

Pharmacologic Treatment of Irritability

This report presents survey results, reviews available irritability studies, and lastly proposes an algorithm for the treatment of irritability in HD derived from expert preferences.

Pharmacologic Treatment of Obsessive-Compulsive Behaviors

This report reviews available studies, and presents an algorithm for the treatment of obsessive compulsive behaviors in HD based on expert practice-based preferences obtained from this survey.

HDSA’s Physician’s Guide

HDSA has published “A Physician’s Guide to the Management of Huntington’s Disease” to give physicians the basics they need to care for people with HD. Click here for an online pdf version of the guide.

HDSA’s Understanding Behavior in HD

HDSA published “Understanding Behavior in Huntington’s Disease:A Guide For Professionals,” using recent findings to outline major behavioral patterns seen in persons with HD and explains current understanding of their causes. Examples from the field are provided,
as well as approaches for managing them. Click here for an online pdf version of the guide.

HDSA’s Genetic Testing Guide

HDSA’s Genetic Testing Guide was developed by an expert committee of HD professionals skilled in the areas of genetic counseling, social services, and neurology. Additionally, HD family members who had already participated in the predictive testing process provided important input throughout the process. Click here for an online pdf version of the guide.

HDSA Publications

HDSA has published numerous materials for both families and physicians. Click here for a full listing of publications.

HSG’s CME4HD Online Education Program

HSG’s popular in-person education program for providers new to treating people with Huntington disease is now available online for FREE. CME and CNE credits available. Click here to learn more.

HDSA/APTA Continuing Education

HDSA has provided education modules for Physical Therapists to learn more about HD and earn CEUs. Click here to access the training from HDSA’s website.

HDSA’s AOTA Continuing Education

HDSA has partnered with the American Occupational Therapy Association to provide CEUs for occupational therapists to learn more about providing care to individuals with HD. Click here to access the training from HDSA’s website.

HSG Webinars

HSG offers periodic webinars presented by our Members or guest experts in the HD field:

Find an HSG Site

HSG credentialed research sites are trained to care for the unique needs of individuals and families impacted by Huntington disease. Visit or site locations page to find a site near you.

Find HDSA sites

HDSA identifies centers throughout the United State that it believes “provide an elite multidisciplinary approach to Huntington’s disease care and research.” In addition, it also has a searchable database of genetic testing centers, long-term care, and legal services. Click here to search.

Find a Genetic Counselor

The National Society of Genetic Counselors provides a database search on its website that includes the United States and Canada. Click here to learn more.

Find a Reproductive Medicine Specialist

When families with HD are deciding whether and how to have children, a referral to a reproductive medicine specialist with experience in hereditary diseases can be helpful. The American Society for Reproductive Medicine provides a searchable database that includes parameters such as genetic counseling and pre-implantation diagnosis. Click here to search.

Find a Speech Pathologist

The American Speech-Language-Hearing Association provides a searchable database of speech pathologists that includes parameters such as brain disorders (neurogenics) and swallowing disorders. Click here to search.

Find a Neurologist

The American Academy of Neurologists provides a searchable database of neurologists that includes sub-specialties. Although Huntington disease isn’t in the drop down list, a search by geography will pull up profiles for neurologists with profiles that include subspecialties in movement disorders. Click here to search.

UHDRS

The UHDRS is a research tool which has been developed by HSG to provide a uniform assessment of the clinical features and course of HD. The UHDRS has undergone extensive reliability and validity testing and has been used as a major outcome measure by the HSG in controlled clinical trials. Click here to learn more.

Learn about GINA

Before referring patients for genetic testing, it’s important to understand the protections and limits of those protections that the Genetic Information and Nondiscrimination Act (GINA) provides. HDSA has an FAQ about GINA on its website here.

Provider Education at HSG’s Annual Event

For more than 25 years, HSG has hosted an annual, internationally recognized forum for training and education of HD researchers and for presentation of new research findings and treatments. HSG’s annual meeting also offers specialized programs for experienced HD clinicians and investigators, as well as a continuing education courses designed for clinicians and HD novices. Click here to access presentations from past years.

Educational Resources for Families

Families may benefit from their own education information from advocacy groups, such as Help4HD, the Huntington’s Disease Society of America (HDSA), HD Reach, the Huntington Society of Canada (HSC), and the European Huntington’s Association (EHA). Help4HD, for example, has brochures on safe proofing the house and educating law enforcement about HD.

Clinical Trials and Studies

Many HD families are eager to participate in research seeking new treatments that make a difference.

  • HSG’s list of current trials is available by clicking here.
  • HSG also provides families with the opportunity to sign up to receive updates on future trials by clicking here.
  • HDSA maintains a robust and searchable list of trials. Click here to access the HD Trial Finder.
  • HDSA holds monthly research webinars. Click here to watch them.
  • ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world, but it can be an overwhelming amount of information. Click here to access it.[/toggle]

HD Research News

Finding reliable and understandable news about HD research is a difficult task.

  • HD Insights is a global research periodical aimed at HD researchers and clinicians around the world. It is distributed to more than 2,600 people across six continents. Click here to read it and to subscribe.
  • The HD Insights Podcast is a long-form, one-on-one interview format to promote, disseminate, and facilitate research and science education in HD by producing informative content that will be valuable to the global community of HD researchers in academia and industry.
  • HDBuzz is written by scientists but in plain language understandable to the average reader. Click here to read it.
  • Gene Veritas is the pseudonym for a blogger at risk for HD. He often writes about HD science and how he makes decisions on participating in trials. Click here to read the blog.
  • HSG also maintains a Twitter account and a Facebook page where there are frequent updates on HD science.

Pysical Therapy Resources

For a list of valuable web information resources for Physical Therapists, download this document.

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Medical information changes constantly. Therefore the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk.

The HSG does not recommend or endorse any specific tests, products, procedures, opinions or other information that may be provided on the linked websites. The linked websites may contain text, graphics, images or information that you find offensive. HSG, its licensors and its suppliers have no control over and accept no responsibility for such materials.