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ABSTRACT: Introduction
Reimbursement decisions on orphan drugs carry significant uncertainty, and as the amount increases, so does the risk of making a wrong decision, where harms outweigh benefits. Consequently, patients often face limited access to orphan drugs. Managed access programmes (MAPs) are a mechanism for managing risk while enabling access to potentially beneficial drugs. Patients and their caregivers have expressed support for these programmes and see patient input as critical to successful implementation. However, they have yet to be systematically involved in their design.Objective
The aim of this study was to co-design with patients and caregivers a tool for the development of managed access programmes.Methods
Building upon established relationships with the C
SUBMITTER: Young A
PROVIDER: S-EPMC6250858 | biostudies-literature | 2018 Dec
REPOSITORIES: biostudies-literature