Involving Patients in Reducing Decision Uncertainties Around Orphan and Ultra-Orphan Drugs: A Rare Opportunity?

@article{Menon2014InvolvingPI,
  title={Involving Patients in Reducing Decision Uncertainties Around Orphan and Ultra-Orphan Drugs: A Rare Opportunity?},
  author={Devidas Menon and Tania Stafinski and Andrea Dunn and Hilary Short},
  journal={The Patient - Patient-Centered Outcomes Research},
  year={2014},
  volume={8},
  pages={29-39}
}
IntroductionUncertainty influences the amount of risk in decision making, and is typically related to clinical benefit, value for money, affordability, and/or adoption/diffusion of the technology (e.g., drug, device, procedure, etc.). Although evidence-based review processes within each stage of the technology lifecycle have been implemented to minimize uncertainty, high-quality information addressing that related to orphan and ultra-orphan drugs is often unavailable. The role that patients, as… 

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