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A14 Health care delivery in Enroll-HD and ehdn’s registry sites: an international survey
  1. Jan C Frich1,2,
  2. Daniela Rae3,4,
  3. Richard Roxburgh5,
  4. Zofia H Miedzybrodzka3,
  5. Mary Edmondson6,
  6. Erika Bjorklund Pope7,
  7. LaVonne Goodman8,
  8. Monica S Haddad9,
  9. Joe Giuliano10,
  10. Eugene C Nelson11,
  11. Mark Guttman12,
  12. Martha Nance13
  1. 1Department of Neurology, Oslo University Hospital, Oslo, Norway
  2. 2Institute of Health and Society, University of Oslo, Oslo, Norway
  3. 3Department of Clinical Genetics, NHS Grampian, Aberdeen, UK
  4. 4Health Services Research Unit, University of Aberdeen, Aberdeen, UK
  5. 5Auckland City Hospital, Auckland, New Zealand
  6. 6HD Reach, Raleigh, NC, USA
  7. 7Pacific Northwest University of Health Sciences, Yakima, WA, USA
  8. 8Huntington’s Disease Drug Works, Lake Forest Park, WA, USA
  9. 9Department of Neurology, School of Medicine, University of São Paulo, São Paulo, SP, Brazil
  10. 10CHDI Management/CHDI Foundation, Princeton, NJ, USA
  11. 11The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, NH, USA
  12. 12Centre for Movement Disorders, Toronto, Ontario, Canada
  13. 13Struthers Parkinson’s Centre, Golden Valley, MN, USA


Background Little is known about variation in service provision for those affected with Huntington’s disease. The Care Improvement Committee of the Enroll-HD study did a survey to describe how health care services are organised and delivered in HD-clinics taking part in or eligible for the Enroll-HD study.

Methods Enroll-HD and other eligible sites (EHDN’s REGISTRY sites) were invited to respond to a 69 items survey that was distributed in 2014.

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. The majority of centres (59.7%) follow 50–199 patients, 21.9% care for more than 200. Most centres (75.2%) provide care in all stages of HD, and nearly all (94%) review pre-symptomatic cases. Care is multidisciplinary in 54.6% of sites, with outreach clinics offered by 48.2%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centres.

Conclusion 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 organised and how such features may be associated with quality of care.

  • Health Services Research
  • Multidisciplinary care

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