External advisors

Ethical Advisory Board (EAB)
An independent body specifically addressing ethical and regulatory issues has been constituted at the very beginning of the project. The Ethics Advisory Board (EAB)  is composed of an independent chair, two additional experts in clincial, ethical and regulatory issues and a representative of lay/patient associations. The EAB will address the complexity of the ethical issues and provide general strategic guidance on ethics and regulatory issues during the early, developmental stages of such an innovative therapy. 

Olle lindvall Professor This email address is being protected from spambots. You need JavaScript enabled to view it. , Lund University, Sweden. Prof Lindvall is a clinical neurologist who has pioneered clinical trials of cell transplantation in Parkinson's disease and is an international expert in primary and stem cell therapy for neurological disorders.
 Göran Professor This email address is being protected from spambots. You need JavaScript enabled to view it. is an academic ethicist at Lund University who has published widely on the ethical issues of human embryos, stem cells and cell therapy trials, and has acted as ethical adviser on several previous EU consortia.
 Hugh  Mr This email address is being protected from spambots. You need JavaScript enabled to view it. is Director of the Nuffield Council of Bioethics, having previously held senior positions in the UK Dept of Health, the Human Fertilisation and Embryology Authority, and the European Commission. He brings specific expertise in ethical regulatory issues.
Cath Stanley 2 Mrs This email address is being protected from spambots. You need JavaScript enabled to view it. is the Chief Executive of the UK Huntington's Disease Association and is the representative of patient and family perspectives and interests.

 

Observational Study Advisor
The Observational study will be conducted in the UK, France and Germany and will involve 48 – 80 patient's suffering from early manifest to moderate stage HD and age matched control subjects. The study will be supervised by the Trial Steering Committee (TSC) which will monitor trial progress and conduct and advise on ethical issues and scientific credibility.

 julie Professor This email address is being protected from spambots. You need JavaScript enabled to view it. form the Monash University, Clayton-Melbourne, Australia, will chair the Study Steering Committee (SSC) as independent expert. Prof Stout is highly experienced in the design of assessment tools for HD (in particular in the cognitive domain) and has recently lead the beta testing for a new cognitive assessment battery within the European Huntington's Disease Network (EHDN).