The International PNH Interest Group PNH Registry
Recruiting now
Conditions studied: Paroxysmal Nocturnal Hemoglobinuria
In brief
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.
Key facts
- Study ID
- NCT06524726
- Run by
- International PNH Interest Group
- People needed
- 2000
- Starts
- 2024-05-10
- Expected to finish
- 2029-05-10
- Last updated by the study team
- 2024-07-29
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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.
You may not qualify if…
- 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.
Where it is running
- International PNH Interest Group — Altamonte Springs, Florida, United States (enrolling)
Full record on ClinicalTrials.gov
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