Status:

RECRUITING

A Real World Effectiveness Study of Pegcetacoplan in Patients With Paroxysmal Nocturnal Hemoglobinuria (PNH)

Lead Sponsor:

Swedish Orphan Biovitrum

Collaborating Sponsors:

Iqvia Pty Ltd

Conditions:

Paroxysmal Nocturnal Hemoglobinuria

Eligibility:

All Genders

18+ years

Brief Summary

This is a 36-month, long-term, multicenter, observational study designed to describe the real world effectiveness of pegcetacoplan in patients with PNH. Patients meeting the eligibility criteria will ...

Detailed Description

As pegcetacoplan is a new product on the market, with a new mechanism of action, there is an urgent need to provide data to treaters, payers and the PNH community on the real-world usage and effective...

Eligibility Criteria

Inclusion

  • Patients ≥18 years of age with a documented PNH diagnosis.
  • Patient started routine treatment with pegcetacoplan for PNH up to 12 months before enrollment or prescribed pegcetacoplan at enrollment. Decision to initiate treatment shall be made by the treating physician and independently from the decision to include the patient in the study.
  • Patient is willing and able to provide written informed consent to participate in the study in a manner approved by the Institutional Review Board/Independent Ethics Committee and local regulations.

Exclusion

  • Enrollment in a concurrent clinical interventional study, or intake of an Investigational Medicinal Product (IMP), within three months prior to the start of the current pegcetacoplan treatment.
  • Initiated current treatment with pegcetacoplan in an interventional study.

Key Trial Info

Start Date :

June 26 2023

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

August 15 2029

Estimated Enrollment :

200 Patients enrolled

Trial Details

Trial ID

NCT05776472

Start Date

June 26 2023

End Date

August 15 2029

Last Update

May 14 2025

Active Locations (75)

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Page 1 of 19 (75 locations)

1

Liverpool Hospital

Liverpool, New South Wales, Australia

2

Calvary Mater Newcastle

Waratah, New South Wales, Australia

3

Sunshine Coast University Hospital

Birtinya, Queensland, Australia

4

AZ Sint-Jan

Bruges, Belgium