PNH Registry

Brief description of study

Alexion Pharmaceuticals, Inc. has been the Sponsor of a global PNH Registry since August 2004 and enrolling patients with PNH worldwide. The primary aim of this Registry has been to record the natural progession of PNH in a multinational database. Data from the Registry were intended for Health Care Providers (HCP) to optimize clinical decision making through enhanced understanding of the variability, progression and natural history of PNH with the ultimate goal of better guiding and assessing therapeutic interventions. Methods of PNH diagnosis and monitoring the patient's clinical course, PNH treatment, including assessing the long term safety and efficacy of available treatment strategies were also collected. An additional objective was to encourage collaboration and the sharing of expertise through a global community of PNH clinical investigators and physicians as well as PNH patients.


Clinical Study Identifier: 11-02227
ClinicalTrials.gov Identifier: NCT01374360
Principal Investigator: David J Araten.


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