Myelodysplastic Syndrome Clinical Trial
Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry
Summary
This study is a collection of data to evaluate safety and characterize progression of Paroxysmal Nocturnal Hemoglobinuria (PNH).
Full Description
Collection of data to evaluate safety and characterize progression of Paroxysmal Nocturnal Hemoglobinuria (PNH).
Eligibility Criteria
Inclusion Criteria:
Patients of any age, including minors, with a diagnosis of PNH or a detected PNH clone, including patients previously treated with Soliris or Ultomiris and withdrawn from treatment.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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There is 1 Location for this study
Boston Massachusetts, 02210, United States More Info
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