Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry PAROXYSMAL NOCTURNAL HEMOGLOBINURIA (PNH) REGISTRY

What's the purpose of this trial?

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

This trial is currently open and accepting patients.

What will happen during the trial?

You may be able to join this trial if you:

The following criteria is a partial list of reasons why patients may be eligible to participate in this clinical trial. Further evaluation with a medical professional is required.

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with a diagnosis of PNH or a detected PNH clone, including patients previously treated with Soliris or Ultomiris and withdrawn from treatment.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.

Additional Trial Information

Observational Trial

Enrollment: 6,000 patients (estimated)

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Need Help?

Interested in joining or learning more about this trial?

(888) 828-2206

Trial Locations

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Massachusetts

Contact the PNH Registry at Alexion Pharmaceuticals, Inc. for worldwide locations.

Boston, MA

Open and Accepting
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