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New medicines: How should we weigh the risks and benefits? And who should do so?
As part of a European research study, Genetic Alliance UK and the Welsh Institute for Health and Social Care (at the University of Glamorgan, UK) want to understand how individuals affected by rare and serious illnesses perceive the risks and benefits of new medicines. The work is key to ensuring that the patient perspective on the analysis of risks and benefits is valued as part of regulatory decision making processes.
How can I get involved?As part of this work we are looking to recruit a group of patients, and the parents of affected children, to take part in a workshop in May 2013, in Dublin. The aim of the workshop is to gather the views of those affected by rare and serious illnesses within Ireland on the regulation of new medicines for their condition. Other such events have been both stimulating and fun to take part in, as well as being a vital part of the research.
Where can I find more information?For more information about the project or the workshop please contact either the research team at the University of Glamorgan or colleagues at IPPOSI:
· Professor Marcus Longley or Amy Simpson on firstname.lastname@example.org/ +44 (0)1443 483070
· Karen Munnelly on email@example.com/ 00353 (1) 407 1629
How should I register my interest? If you think you would like to take part in the workshop please contact Karen Munnelly to register your interest.
Please note, the time and date of the workshop has not yet been confirmed. We will work with participants to find a time convenient for them.