Global PNH Patient 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
- 500 (estimated)
- Sponsor
- Aplastic Anemia and MDS International Foundation · Other
Think this trial could be right for you?
Answer a few quick questions to see if you may meet the eligibility requirements.
Check Your Eligibility
About This Trial
The primary aim of the Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry is to conduct a prospectively-planned and efficient natural history study that will result in a more comprehensive understanding of the disease and its course and pace over time. Other registry objectives include the following:
* Provide a convenient online platform for participants (or caregivers) to self-re…
Trial Locations
Loading…
Loading trial locations…
Eligibility Criteria
Inclusion Criteria:
\- Individuals of any age with a confirmed diagnosis of PNH or diagnosis consistent with PNH are eligible for inclusion. PNH is defined as a genetic mutation in the PIG-A gene.
Individuals must be willing to provide informed consent. Participants can be:
* legal adult particip…
Contacts