Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry

Completed

Conditions studied: Paroxysmal Nocturnal Hemoglobinuria

In brief

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

Key facts

Study ID

NCT01374360

Run by

Alexion Pharmaceuticals, Inc.

People needed

6061

Starts

2004-10-29

Expected to finish

2025-04-14

Last updated by the study team

2026-01-20

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

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with a diagnosis of PNH or a detected PNH clone, including patients previously treated with Soliris or Ultomiris and withdrawn from treatment.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

You may not qualify if…

• 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.

Where it is running

• Contact the PNH Registry at Alexion Pharmaceuticals, Inc. for worldwide locations. — Boston, Massachusetts, United States

Full record on ClinicalTrials.gov

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