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Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry | Clinical Trials | Clareo Health

COMPLETED

Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry

NCT01374360•Alexion Pharmaceuticals, Inc.

Summary

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

Detailed Description

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

Eligibility

Age

All ages

Sex

ALL

Healthy Volunteers

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with a diagnosis of PNH or a detected PNH clone, including patients previously treated with Soliris or Ultomiris and withdrawn from treatment.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

Locations (1)

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

Boston, Massachusetts, United States

Key Dates

Start Date

October 29, 2004

Primary Completion Date

April 14, 2025

Completion Date

April 14, 2025

Last Updated

January 20, 2026

Enrollment

6,061

ACTUAL participants

Conditions

Paroxysmal Nocturnal Hemoglobinuria

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Severe Aplastic Anemia (SAA)Hypo-Plastic Myelodysplastic Syndrome (MDS)+1 more

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RECRUITING

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Data Source & Attribution

This clinical trial information is sourced from ClinicalTrials.gov, a service of the U.S. National Institutes of Health.

ClinicalTrials.gov last update: January 20, 2026Data synced to Clareo: March 29, 2026

Modifications: This data has been reformatted for display purposes. Eligibility criteria have been parsed into inclusion/exclusion sections. Location data has been geocoded to enable distance-based search. For the authoritative and most current information, please visit ClinicalTrials.gov.

Neither the United States Government nor Clareo Health make any warranties regarding the data. Check ClinicalTrials.gov frequently for updates.

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Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry

Inclusion Criteria

Exclusion Criteria

Haplo-identical Transplantation for Severe Aplastic Anemia, Hypo-plastic MDS and PNH Using Peripheral Blood Stem Cells and Post-transplant Cyclophosphamide for GVHD Prophylaxis

National Longitudinal Cohort of Hematological Diseases

Investigation of Pharmacokinetics,Safety,and Pharmacodynamics of HSK39297 in Subjects With Hepatic Impairment

Home Reported Outcomes in PNH

Long-Term Safety, Tolerability and Efficacy of OMS906 in Paroxysmal Nocturnal Hemoglobinuria

A Long-term Safety and Efficacy Study of Danicopan as an Add-on Therapy to Complement Component 5 Inhibitor (C5i) in Participants With PNH