Status:
RECRUITING
The International PNH Interest Group PNH Registry
Lead Sponsor:
International PNH Interest Group
Conditions:
Paroxysmal Nocturnal Hemoglobinuria
Eligibility:
All Genders
Brief Summary
The aim of this International PNH Interest Group (IPIG) registry is to develop an international database to prospectively collect data on patients with PNH covering clinical outcomes, patient reported...
Detailed Description
The International PNH Interest Group (IPIG) PNH Registry is an international, observational database collecting real-world health information about PNH patients over time. The registry is owned and ma...
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.
Key Trial Info
Start Date :
May 10 2024
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
May 10 2029
Estimated Enrollment :
2000 Patients enrolled
Trial Details
Trial ID
NCT06524726
Start Date
May 10 2024
End Date
May 10 2029
Last Update
July 29 2024
Active Locations (1)
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1
International PNH Interest Group
Altamonte Springs, Florida, United States, 32714