Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model

Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model

Orphan drug clinical trials often are adversely affected by a lack of high quality treatment efficacy data that can be reliably compared across large patient cohorts derived from multiple governmental and country jurisdictions. It is critical that these patient data be captured with limited corporat...

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Bibliographic Details
Main Authors: Bellgard, M., Napier, K., Bittles, A., Szer, J., Fletcher, S., Zeps, Nikolajs, Hunter, A., Goldblatt, J.
Format: Journal Article
Published: 2016
Online Access:http://hdl.handle.net/20.500.11937/49847

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