The International PNH Interest Group PNH Registry
Recruiting
Observational Study
Paroxysmal Nocturnal Hemoglobinuria
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 2,000 (estimated)
- Sponsor
- International PNH Interest Group · Other
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About This Trial
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.
Trial Locations
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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 regulat…
Contacts