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Conference:
Pre-conference workshop
1 Dec 9am - 5pm
Day 1
2 Dec 8.30am - 5:30pm
Day 2
3 Dec 8.30am - 5:30pm
Post-conference workshop
4 Dec 8.30am - 5:30pm
Venue:
The Bloomsbury Hotel, London, United Kingdom
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Dr Emma James,
UK LSD Registry Co-ordinator Genzyme Therapeutics, United Kingdom Emma graduated from the University of Wales, Aberystwyth, with a first class degree in genetics and biochemistry before completing her DPhil in medical genetics at Trinity College, Oxford. Following this, she spent a number of years working in both medical communications and health economics, facilitating publication of data and treatment reimbursement on behalf of the pharmaceutical industry. Genzyme is a biotechnology company that manufactures enzyme replacement therapies for lysosomal storage disorders (LSDs), which are extremely rare (orphan), life threatening, genetic disorders and include conditions such as Gaucher disease, Mucopolysaccharidosis I, Fabry disease and Pompe disease. Emma has been working in Genzyme�s medical department for 2 years as the UK Registry Co-ordinator for the four LSD Registries that Genzyme supports. Emma�s role includes working with participating sites to facilitate high quality data entry to enable meaningful analyses, and educating both the scientific and medical community about the value and the role of registries in caring for individuals with rare diseases.Appearing: Day Two - Thursday 3 December 2009 10.00 Enhancing patient care through disease registries• What is a disease registry?
• The regulatory perspective: how do registries contribute to drug development?
• How do disease registries enhance patient care in rare diseases?
UK LSD Registry Co-ordinator,
Genzyme Therapeutics, United Kingdom |
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Dr Ellen Strahlman
Chief Medical Officer
GlaxoSmithKline
Dr Clive Morris
Medical Science Director
AstraZeneca
Mark Latymer
Scientific Advisor
Pfizer
Amy Sing
Associate Group Director - Post Marketing
Genentech
Professor Markus Kosch
Associate Medical Director
Wyeth Pharma
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