MAPPING HD SERVICES IN THE UK - A PARTNERSHIP APPROACH

Aims Across the UK Huntington’s Disease (HD) services have organically grown across different healthcare specialties:- psychiatry, neurology, and genetics. Currently, there is not a UK-wide picture of how HD services are delivered, funded, or staffed at a local level or how many patients are treated in each service. The aim of this project is to undertake a survey of UK HD services to map the current organisation, resources, funding and explores the future resource needs. It is intended to capture and quantify any differences in the services across the four UK nations and in individual services. Methods/Techniques This project is being delivered through a partnership between the United Kingdom Huntington’s Disease Network (UKHDN), the Huntington’s Disease Association (HDA), the Scottish Huntington’s Association (SHA) and Roche. The project is being funded solely by Roche Products Ltd. The data will be gathered through both a quantitative questionnaire and a one-hour qualitative interview led by HDA or SHA, as appropriate. All UK HD centres will be invited to take part in this project. A report will be produced and the data will be shared with the HD Community. Results/Outcome The project team is committed to producing a report which will be publically available. This will enable the whole UK HD community to access the data collected at both a national and local level. The wider HD community will benefit from the data gathered as it has not been captured before. Conclusions It is hoped that this new data will provide a local and national picture of current services and act as evidence to support dialogues with payers/decision-makers to help secure resourcing for current and future HD service needs.