BACKGROUND: Huntington's disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person's functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of the disease demands multiple disciplines for treatment and care of patient and family. These health care providers need inter- and multidisciplinary collaboration to persevere and be efficacious in this devastating disease trajectory. DISCUSSION: The position paper outlines current knowledge and experience alongside the experience and consensus of a recognised group of HD multidisciplinary experts. Additionally the patient's voice is clear and calls for health care providers with a holistic view on patient and family. Building long-term trust is a cornerstone of the network around the patient. This paper describes a managed care network comprising all the needed professionals and services. In the health care system, the role of a central coordinator or case manager is of key importance but lacks an appropriate guideline. Other disciplines currently without guidelines are general practitioners, nurses, psychologists, and social workers. Guidelines for neurologists, psychiatrists, geneticists, occupational therapists, speech and language therapists, physiotherapists, dieticians, and dentists are being discussed. Apart from all these profession-specific guidelines, distinctive inter- and multidisciplinary collaboration requirements must be met. CONCLUSIONS AND RECOMMENDATIONS: The complex nature of Huntington's disease demands multidisciplinary treatment and care endorsed by international regulations and the lay association. Available guidelines as reviewed in this paper should be used, made available by a central body, and updated every 3-5 years. Time needs to be invested in developing missing guidelines but the lack of this 'proof' should not prevent the 'doing' of good care.

Amsterdam Public Health Aging and Later Life Amsterdam The Netherlands

Centre for Precision Health Edith Cowan University Perth Australia

Department of Medicine for Older People Amsterdam UMC Location Vrije Universiteit Amsterdam Amsterdam The Netherlands

Department of Neurology and Center of Clinical Neuroscience 1st Faculty of Medicine Charles University and General University Hospital Prague Czech Republic

Department of Neurology Oslo University Oslo Norway

Department of Neurology University Ulm Ulm Germany

Department of Neuropsychiatry Huntington Center South Kbo Isar Amper Klinikum Taufkirchen Taufkirchen Germany

Department of Neurorehabilitation Oslo University Hospital Oslo Norway

European Huntington Association Moerbeke Waas Belgium

Hennepin County Medical Center Minneapolis MN USA

Huntington Expert Centre Atlant Apeldoorn The Netherlands

Inspire Neurocare Worcester UK

Rehabilitation Unit DAS ASL Bari Bari Italy

Struthers Parkinson's Center Golden Valley Minneapolis MN USA

Unit for Congenital and Hereditary Neuromuscular Disorders Department of Neurology Oslo University Hospital Oslo Norway

Vikersund Rehabilitation Centre Vikersund Norway

West Midlands Huntington's Disease Team Neuropsychiatry The Barberry Birmingham UK

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