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The International PNH Interest Group PNH Registry

This study is a registry for people with Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare blood disorder. It aims to gather information about PNH patients around the world to better understand the condition, how it affects daily life, and how healthcare resources are used. This registry is observational, meaning you won't receive any new treatments as part of the study. Instead, researchers will collect your health information over time. To join, you must have PNH confirmed by a specific blood test called flow cytometry and be willing to provide consent. The goal is to increase knowledge about PNH and describe the patient population over 5-10 years.

Study design
This is an observational study aiming to enroll 2000 participants. It is designed to collect real-world health information about PNH patients.
What's involved
Data is collected when you enroll and every six months during follow-up. You will provide written informed consent to participate.
Compensation
Not stated in the trial record.
Follow-up
Data will be collected at 6-month intervals, with the primary goal of increasing knowledge about PNH over 5-10 years.

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NCT06524726

The International PNH Interest Group PNH Registry

Recruiting
Not specifiedAll AgesObservational
International PNH Interest Group
~2,000 participants
Updated 2024-07-29 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Increase knowledge of PNH and describe the PNH patient population
Measured over 5-10 years

Conditions

Paroxysmal Nocturnal Hemoglobinuria

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Where it's being run

1 sites across 1 states
Florida1

Study leadership

  • Richard Kelly, MBChB PhD · PRINCIPAL_INVESTIGATOR · International PNH Interest Group
  • Jeff Szer, MB BS FRACP · STUDY_CHAIR · International PNH Interest Group

Who to contact

IPIG Registry Coordinator
[email protected]
Please email
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Eligibility criteria

Inclusion

Patients with PNH confirmed by flow cytometry.
Patient and/or parent/legally authorized representative provide written informed consent/assent to participate in the registry in a manner approved by the Institutional Review Board/Independent Ethics Committee and local regulations.

Exclusion

Participating in an interventional PNH clinical trial. Note: A patient included in the registry, who enrolls in an interventional PNH clinical trial during the course of the registry, will be kept in the registry but data collection will be paused in the registry during their involvement in the clinical trial/extension study. Data collection in the registry will continue after patient involvement in the clinical trial/extension study has ended or trial protocol mandated data collection ceases.

What this trial measures

  • Increase knowledge of PNH and describe the PNH patient population5-10 years

    To describe PNH disease natural history and PNH treatment course, the patterns of treatment usage, long-term safety of PNH treatments, assess patient reported quality of life and describe health resource usage