Participation in research
Examples of Support
Getting information about clinical trials & other research
Key Services and People
Lothian HD Service ( HD Clinical Lead , HD Specialists , Specialist Youth Advisor , Financial Wellbeing Officer )
Clinical Research Facilities
Clinical Genetics
NHS Research Scotland – Dementia & Neurodegenerative Disease
European Huntington’s Disease Network
European Huntington’s Association
Scottish Huntington’s Association Youth Project ( SHAYP ) / Specialist Youth Advisors
Scottish Huntington’s Association
Integrated Multi Agency Arrangements, Referral Pathways and Resources
Refer to HD Specialists for local knowledge and direction to appropriate research clinic
NHS Research Scotland – Dementia & Neurodegenerative Disease
Standards
All work should be done in line with ICH Good Clinical Practice Guidelines
Clinical research opportunities should be available in every health board area.
Outcomes
More people with HD and their families are given the opportunity to participate in clinical trials, where appropriate.