Paroxysmal Nocturnal Hemoglobinuria treated with Pegcetacoplan Patient Registry

Overview

About this study

The purpose of this study is to establish a registry to characterize the long-term safety of pegcetacoplan in adult patients with PNH, including patients who are treatment naïve, with at
least 5 years of follow-up.
 

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria: 

  • Enrolled in the core PNH registry or has PNH confirmed by high-sensitivity flow cytometry who will enroll in the core PNH registry.
  • Currently receiving pegcetacoplan treatment.
  • Patient or legally authorized representative are willing and able to provide written informed consent to participate in the pegcetacoplan PNH registry in a manner approved by the IRB/IEC and local regulations.

Exclusion Criteria: 

  • Participating in an interventional PNH clinical trial.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 6/6/23. Questions regarding updates should be directed to the study team contact.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status

Rochester, Minn.

Mayo Clinic principal investigator

David Dingli, M.D., Ph.D.

Closed for enrollment

More information

Publications

Publications are currently not available

Additional contact information

Non-cancer trials contact form

Phone: 800-664-4542 (toll-free)

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