Patients’ Needs Beyond Your Clinical Practice

A Huntington's disease diagnosis can lead to questions beyond the clinical aspects of the disease. Patients and caregivers also require an understanding of the health insurance and disability landscape. Below are resources for you and your patients to help further that understanding.

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Navigating Insurance Icon Paper Documents

An Insurance and Disability Guide for the HD Community

This guide was designed to help provide the HD community with some information about health and disability insurance. You can use it to help answer some of the questions your patients may have. Or you can share it directly with them and their caregivers.

    • 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.