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The International PNH Interest Group PNH Registry
RecruitingObservational study
Who can join
All ages · All sexes
Full 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.
About the study
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 outcomes (PROs), and health-resource utilization (HRU) on all enrolled patients, as well as long term safety data.
Sponsor: International PNH Interest Group · Participants: 2,000 · Started: May 10, 2024
Contact the study team
- IPIG Registry Coordinator · Phone: Please email
Official record on ClinicalTrials.gov — NCT06524726
Locations in the U.S.
| Florida | International PNH Interest Group, Altamonte Springs |
Conditions
- Paroxysmal Hemoglobinuria
- Hemolytic Anemia
- Anemia
- Blood Disorders
- Myelodysplastic Syndromes
- Bone Marrow Diseases
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.