23 Jul 2012 Posted in News Release By Press Office
Stephen Whitehead added:
"There is a robust framework already in place to evaluate these medicines developed by the Advisory Group on National Specialised Services (AGNSS) and it will be important that this framework is fully embraced by NICE. The inclusion of criteria in this framework such as societal value, contribution to research and budget impact, are vitally important when assessing medicines for very rare diseases and must be given prominence in decision making. Estimates of cost effectiveness are notoriously difficult to establish for these kinds of medicines and are generally not useful to aid decision making.
“It will be important that an appropriately qualified, multi-disciplinary expert panel is assembled by NICE to support the evaluation process and that companies are fully involved throughout. We look forward to engaging with NICE to ensure that a system is set up which enables patients with very rare diseases to benefit from the newest and most innovative medicines.”
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