Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry



Status:Recruiting
Conditions:Hematology
Therapuetic Areas:Hematology
Healthy:No
Age Range:Any
Updated:1/17/2018
Start Date:January 2007
End Date:December 2020
Contact:Alexion Pharmaceuticals, Inc.
Email:PNHregistry@alxn.com

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This study is a collection of data to evaluate safety and characterize progression of
Paroxysmal Nocturnal Hemoglobinuria (PNH).

Collection of data to evaluate safety and characterize progression of Paroxysmal Nocturnal
Hemoglobinuria (PNH).

Inclusion Criteria:

- Patients of any age, including minors, with a diagnosis of PNH or a detected PNH
clone, including patients previously treated with Soliris and withdrawn from
treatment. Patients who are minors must have parent/legal guardian consent and must be
willing and able to give assent, if applicable as determined by the Ethics
Committees/Institutional Review Boards. Upon attaining adulthood, these patients must
be re-consented.

- Ability to comprehend and sign consent to have data entered in the PNH Registry.

Exclusion Criteria:

- Inability or unwillingness to sign informed consent.

- Patients currently enrolled in an interventional clinical trial for treatment of PNH
cannot be enrolled in the Registry at the same time.
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