PNH Registry


   TAGS:     Other PNH

Study Description: The PNH Registry is a Registry with enrollment of PNH patients whether or not receiving Soliris therapy, and will capture data on PNH patients treated with Soliris. Additionally, it will collect information on the progression of disease in the Soliris treated and untreated PNH population, including those patients who discontinue Soliris therapy. All patients with a diagnosis of PNH or who are untreated or are being treated with Soliris will be eligible for enrollment subsequent to providing informed consent. Physicians and patients will be encouraged to provide updates to the safety portion of the Registry as well as to follow patients who discontinue Soliris.

Contact for Enrollment

    
     (706) 721-2171
    lwells@gru.edu

    Submit Information Online

Principal Investigator: Abdullah Kutlar

Eligibility Criteria: all patients with a diagnosis of PNH or a detected PNH clone, whether or not they are treated with Soliris. 18 years and older

Compensation: No, subjects will not be compensated.

 

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