An international group of experts, led by MedStar Georgetown University Hospital’s Karen Anderson, MD, recently published new clinical guidelines focusing on the treatment of behavioral symptoms seen in patients with Huntington’s disease.
Huntington’s disease is a fatal genetic disorder that impairs physical and mental abilities as movement-controlling cells die in the brain. It’s estimated that 70% of American patients with the disease do not receive specialist care; instead seeking treatment from general practitioners, general neurologists, and psychiatrists.
“These guidelines convey the important message that we have treatments available now for many neuropsychiatric symptoms of HD. This should encourage patients to seek care. They also help non-specialist clinicians understand that HD is a not a hopeless condition,” explains Dr. Anderson, director of the Huntington’s Disease Care, Education, and Research Center (HDCERC), a joint program between MedStar Georgetown University Hospital and Georgetown University Medical Center.
The guidelines, published in the Journal of Huntington’s Disease, provide primary caregivers with a stronger set of tools and specialist-led strategies to treat five behavioral symptoms of the disease: agitation, anxiety, apathy, psychosis, and sleep disorders.
Before publication, Dr. Anderson and the panel of nine others submitted ideas to Huntington’s disease experts around the world to reach consensus. Clinical Practice Guidelines (CPG) like these can be relied on in the absence of randomized clinical trial evidence, which is harder to obtain when studying rarer diseases.
“We encourage patients and families to use these guidelines to partner with their clinicians when seeking care since these symptoms often have a huge impact on patients’ wellbeing and their relationships with individuals close to them,” advised Dr. Anderson.
Currently, there is no treatment available to slow, stop, or reverse the course of Huntington’s disease, according to the Centers for Disease Control.