Health Care Delivery Practices in Huntington's Disease Specialty Clinics: An International Survey

Jan C. Frich, Daniela Rae, Richard Roxburgh, Zofia H. Miedzybrodzka, Mary Edmondson, Erika Bjorklund Pope, LaVonne Goodman, Monica S. Haddad, Joe Giuliano, Eugene C. Nelson, Mark Guttman, Martha Nance

Research output: Contribution to journalArticlepeer-review

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BACKGROUND: Little is known about the organization of clinical services for Huntington's disease (HD).

OBJECTIVE: To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study.

METHODS: In 2014, a 69-item survey was administered to sites taking part in or eligible for the Enroll-HD study.

RESULTS: Of 231 sites surveyed, 121 (52.2%) sites in Europe, North America, Latin America, and Oceania responded. Most sites in the sample serve large populations, with 61.1% serving more than 1.5 million people, and a further 33% serving >500,000. Almost all (86.0%) centers see patients from outside their region. The majority of centers (59.7%) follow 50-199 patients, 21.9% care for more than 200. Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. Multidisciplinary case reviews are offered in 54.5% of sites, with outreach clinics offered by 48.1%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centers. Most centers (70.4%) report following published guidelines or local care pathways for HD.

CONCLUSIONS: Most centers serve a large population and use a multidisciplinary approach. The survey gives insight into factors underpinning HD service delivery globally. There is a need for more in-depth studies of clinical practice to understand how services are organized and how such features may be associated with quality of care.

Original languageEnglish
Pages (from-to)207-213
Number of pages7
JournalJournal of Huntington's disease
Issue number2
Publication statusPublished - 1 Jul 2016

Bibliographical note

The CHDI Foundation, Inc. funds Enroll-HD and the activities of the Enroll-HD Care Improvement Committee, including the present survey. We would like to acknowledge the Enroll-HD and REGISTRY administrative staff that assisted in the recruitment of sites and sites that completed the survey.


  • Huntington’s disease
  • health services
  • quality of health care


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