The International PNH Interest Group PNH Registry

Launched by INTERNATIONAL PNH INTEREST GROUP · Jul 23, 2024

Keywords

ClinConnect Summary

The International PNH Interest Group (IPIG) has started a registry to gather important information about patients with Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare blood condition. This registry aims to create a large database that collects details on how patients are doing, their experiences with the disease, and how often they use healthcare services. The goal is to understand PNH better and ensure long-term safety for those living with it.

To join the registry, participants must have a confirmed diagnosis of PNH and provide consent to take part. This means they, or their legal guardians, need to agree to share their health information. The registry is open to everyone, regardless of age or gender, as long as they meet the criteria. Once enrolled, participants can expect their health information to be tracked over time, even if they decide to join another clinical trial later on. This research will help improve care for all patients with PNH in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 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 Criteria:
• • 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.