NCT01374360Completed
Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry
Source: ClinicalTrials.gov · Last updated 20 Jan 2026
Brief summary (registry, in English)
This study is a collection of data to evaluate safety and characterize progression of Paroxysmal Nocturnal Hemoglobinuria (PNH).
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 6061 (actual)
- First submitted
- 15 Apr 2011
- Start date
- 29 Oct 2004
- Primary completion date
- 14 Apr 2025
- Lead sponsor
- Alexion Pharmaceuticals, Inc.
- NCT number
- NCT01374360
What you commit to
- Study type: Observational
- Participants enrolled: 6061
- From 29 Oct 2004 to the primary completion date, 14 Apr 2025
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Inability or unwillingness to sign informed consent.
- Patients currently enrolled in an interventional clinical trial for treatment of PNH cannot be enrolled in the Registry at the same time.
Who the study is looking for
- Patients of any age, including minors, with a diagnosis of PNH or a detected PNH clone, including patients previously treated with Soliris or Ultomiris and withdrawn from treatment. Patients who are minors must have parent/legal guardian consent and must be willing and able to give assent, if applicable as determined by the Ethics Committees/Institutional Review Boards. Upon attaining adulthood, these patients must be re-consented.
- Ability to comprehend and sign consent to have data entered in the PNH Registry.
Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| - Coordinator of this site? Confirm its status | Boston | United States | Unknown status |
Related publications
This page is information, not medical advice. Discuss any trial with your doctor.