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- Title
Qualitative evaluation of the Canadian Fabry Disease Initiative.
- Authors
Embrett, Mark; Mackinnon, Neil J
- Abstract
In late 2005, the federal and provincial governments responded to an increasing demand from physicians and their patients with Fabry disease for access to enzyme replacement therapy (ERT). This response took the form of a nationwide clinical research study, the Canadian Fabry Disease Initiative (CFDI). Patients who enrolled as participants in this longitudinal study received 1 of 2 ERT treatments. The present study used a qualitative evaluative approach to describe the perspectives of various key stakeholders regarding the CFDI and its potential as a model for providing access to expensive drugs for rare diseases.
- Publication
Canadian pharmacists journal : CPJ = Revue des pharmaciens du Canada : RPC, 2012, Vol 145, Issue 3, p136
- ISSN
1715-1635
- Publication type
Journal Article
- DOI
10.3821/145.3.cpj136