Full Study Name
EURO HD – Services for Juvenile Huntington’s Disease
Sheffield Children’s Hospital
Local Principal Investigator
Dr Oliver Quarrell
- Obtain a direct minimum prevalence of the cases of JHD in the UK.
- Document the services currently accessed by patients and families with JHD, and those most valued by JHD families.
- Estimate the economic cost of the current ad hoc service provision for JHD.
- Consult JHD families and health professionals directly on their views regarding:
- The current ad hoc service provision for JHD.
- Whether additional services, not currently available, locally would be useful.
- Estimate the economic cost of providing a national multi-professional service for patients and families with JHD.
- Model the economic cost of dedicated national multidisciplinary clinics, with concentrated specialist JHD experience/support services, delivered either face-to-face in a traditional multidisciplinary clinic, or using tele-health technology.
All patients with onset of HD under the ≤ 20 years
Bristol, Oxford, Southampton, Cardiff, Birmingham, Exeter, Leeds, Leicester, Liverpool, North West London, Manchester, Nottingham, Cambridge, St George’s, Newcastle, Edinburgh, Dundee, Guy’s, Glasgow
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