Benefits of a Multidisciplinary Care Team 

Since Huntington’s disease (HD) has such varied symptoms, it is important for you to work closely with other healthcare professionals to create personalized care plans to address your patients’ diverse needs.2,9

The goal of the multidisciplinary care team is to reduce the burden of symptoms, maximize function and optimize quality of life.11

Working With Multidisciplinary Care Teams 

Around the country there are dedicated centers where your patients and their families can get the multidisciplinary support they need throughout the course of their disease.11

Hear about Ed’s experience with his care team at his local Center of Excellence.

Help your patients find a center near them: 

HDSA Care Services

HSG Credentialed Sites

Care Team Members 

Here are just some of the Huntington’s disease specialists who can help you treat patients and their specific needs.

Core Clinical Team

Core Clinical Care Team Neurologists

Neurologists

Neurologists oversee the diagnosis, overall care coordination, neurological management, and referrals to other team members during all stages of HD progression.11

Core Clinical Care Team Psychiatrists

Psychiatrists

Psychiatrists work with patients over the course of their disease, providing overall care coordination, psychiatric management, and medications, while helping them navigate the mental healthcare system.11

Allied Support Team

Allied Support Team Social Worker

Social Workers

Social workers help patients with everything from financial and insurance planning to connecting them with support groups and HD programs. They also provide access to community services and help manage family conflicts in the later stages of HD.11

Allied Support Team Genetic Counselor

Genetic Counselors

Genetic counselors work in the early stages of HD, assisting patients with genetic testing and family counseling.11

Allied Support Team Nurse Specialist

Nurse Specialists

Nurse specialists manage cases as well as provide telephone counseling and support for patients and their families.11

Allied Support Team Dietititan

Dietitians

Dietitians work with patients on healthy eating for HD. They make recommendations on calorie counts, food and liquid alterations, and assist with proper feeding tube supplements (if appropriate).11

Allied Support Team Physical Therapists

Physical Therapists

Physical therapists develop exercise programs and help with home preparedness and safety for the early stages of HD. As the disease progresses, they assess the need for assistive devices and the nonpharmacologic management of motor symptoms.11

Allied Support Team Occupational Therapists

Occupational Therapists

Occupational therapists, if appropriate, do an assessment of the patients’ workplace and their driving abilities in the early stages of HD. Once in the middle to late stages, they help with home safety, assessment of activities of daily living (ADLs), and the equipment needed for seating, sleeping, feeding, hygiene, etc.11

Allied Support Team Neuropsychologists

Neuropsychologists

Neuropsychologists oversee the management of symptoms related to personality and cognitive changes in patients. Their role ranges from counseling patients about compensatory strategies to disability and competence assessments to family counseling in regard to cognitive changes.11

Allied Support Team Psychologists

Psychologists

Psychologists offer family support and counseling on matters relating to their relationships, grief, and symptom management.11

Allied Support Team Speech and Language Therapists

Speech and Language Therapists

Speech and language therapists will conduct a preemptive evaluation of swallow function and provide counseling about safe swallowing in the early stages of HD. As the disease progresses, they reevaluate dysphagia, reassess speech and communication skills, and offer individual and family counseling (as needed).11

    • Huntington’s Disease Collaborative Research Group. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell. 1993;72:971-983.

      Huntington’s Disease Collaborative Research Group. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell. 1993;72:971-983.

    • Ghosh R, Tabrizi SJ. Huntington disease. In: Geschwind DH, Paulson HL, Klein C, eds. Handbook of Clinical Neurology, Vol 147. Elsevier BV; 2018;255-278. https://doi.org/10.1016/B978-0-444-63233-3.00017-8

      Ghosh R, Tabrizi SJ. Huntington disease. In: Geschwind DH, Paulson HL, Klein C, eds. Handbook of Clinical Neurology, Vol 147. Elsevier BV; 2018;255-278. https://doi.org/10.1016/B978-0-444-63233-3.00017-8

    • Huntington G. On chorea. J Neuropsychiatry Clin Neurosci. 2003;15(1):109-113.

      Huntington G. On chorea. J Neuropsychiatry Clin Neurosci. 2003;15(1):109-113.

    • Moscovich M, Munhoz RP, Becker N, et al. Américo Negrette and Huntington’s disease. Arq Neuropsiquiatr. 2011;69(4):711-713.

      Moscovich M, Munhoz RP, Becker N, et al. Américo Negrette and Huntington’s disease. Arq Neuropsiquiatr. 2011;69(4):711-713.

    • Rodrigues FB, Byrne LM, Wild EJ. Biofluid biomarkers in Huntington’s Disease. Methods Mol Biol. 2018;1780:329-396.

      Rodrigues FB, Byrne LM, Wild EJ. Biofluid biomarkers in Huntington’s Disease. Methods Mol Biol. 2018;1780:329-396.

    • Yohrling G, Raimundo K, Crowell V, Lovecky D, Vetter L, Seeberger L. Prevalence of Huntington’s Disease in the US [abstract taken from HSG 2019]. Neurotherapeuticshttps://doi.org/10.1007/s13311-019-00788-3. Published October 8, 2019.

      Yohrling G, Raimundo K, Crowell V, Lovecky D, Vetter L, Seeberger L. Prevalence of Huntington’s Disease in the US [abstract taken from HSG 2019]. Neurotherapeuticshttps://doi.org/10.1007/s13311-019-00788-3. Published October 8, 2019.

    • Bates GP, Dorsey R, Gusella JF, et al. Huntington disease. Nat Rev Dis Primers. 2015;1:15005.

      Bates GP, Dorsey R, Gusella JF, et al. Huntington disease. Nat Rev Dis Primers. 2015;1:15005.

    • Anderson KE, van Duijn E, Craufurd D, et al. Clinical management of neuropsychiatric symptoms of Huntington disease: expert-based consensus guidelines on agitation, anxiety, apathy, psychosis and sleep disorders. J Huntingtons Dis. 2018;7(3):355-366.

      Anderson KE, van Duijn E, Craufurd D, et al. Clinical management of neuropsychiatric symptoms of Huntington disease: expert-based consensus guidelines on agitation, anxiety, apathy, psychosis and sleep disorders. J Huntingtons Dis. 2018;7(3):355-366.

    • Roos RAC. Huntington disease: a clinical review. Orphanet J Rare Dis. 2010;5:40. doi:10.1186/1750-1172-5-40.

      Roos RAC. Huntington disease: a clinical review. Orphanet J Rare Dis. 2010;5:40. doi:10.1186/1750-1172-5-40.

    • Frank S. Treatment of Huntington’s disease. Neurotherapeutics. 2014;11(1):153-160.

      Frank S. Treatment of Huntington’s disease. Neurotherapeutics. 2014;11(1):153-160.

    • Nance M, Paulsen JS, Rosenblatt A, Wheelock V. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. New York, NY: Huntington's Disease Society of America; 2011.

      Nance M, Paulsen JS, Rosenblatt A, Wheelock V. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. New York, NY: Huntington's Disease Society of America; 2011.

    • Huntington’s Disease Society of America. HDSA Family Guide Series: Physical and Occupational Therapy—Huntington’s Disease. http://hdsa.org/wp-content/uploads/2015/03/PhysicalOccupationalTherapy_FamilyGuide.pdf. Accessed May 17, 2019.

      Huntington’s Disease Society of America. HDSA Family Guide Series: Physical and Occupational Therapy—Huntington’s Disease. http://hdsa.org/wp-content/uploads/2015/03/PhysicalOccupationalTherapy_FamilyGuide.pdf. Accessed May 17, 2019.

    • Wild EJ, Boggio R, Langbehn D, et al. Quantification of mutant huntingtin protein in cerebrospinal fluid from Huntington's disease patients. J Clin Invest. 2015;125(5):1979-1986.

      Wild EJ, Boggio R, Langbehn D, et al. Quantification of mutant huntingtin protein in cerebrospinal fluid from Huntington's disease patients. J Clin Invest. 2015;125(5):1979-1986.

    • Gusella JF, Wexler NS, Conneally PM, et al. A polymorphic DNA marker genetically linked to Huntington’s disease. Nature. 1983;306:234-238.

      Gusella JF, Wexler NS, Conneally PM, et al. A polymorphic DNA marker genetically linked to Huntington’s disease. Nature. 1983;306:234-238.

    • Kendrick LM, Hudgell D, Hellman A, Weaver MS. Attending to total pain in juvenile Huntington disease: a case report informed by narrative review of the literature. J Palliat Care. 2019. doi:10.1177/0825859719835560.

      Kendrick LM, Hudgell D, Hellman A, Weaver MS. Attending to total pain in juvenile Huntington disease: a case report informed by narrative review of the literature. J Palliat Care. 2019. doi:10.1177/0825859719835560.

    • Piira A, van Walsem MR, Mikalsen G, Nilsen KH, Knutsen S, Frich JC. Effects of a one year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: a prospective intervention study. http://currents.plos.org/hd/index.html%3Fp=7893.html. Accessed January 16, 2020.

      Piira A, van Walsem MR, Mikalsen G, Nilsen KH, Knutsen S, Frich JC. Effects of a one year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: a prospective intervention study. http://currents.plos.org/hd/index.html%3Fp=7893.html. Accessed January 16, 2020.