Global registry for people with paroxysmal nocturnal hemoglobinuria
Part of Blood & lymphatic clinical trials.
This trial is a global patient registry that collects health information from people diagnosed with PNH (a blood condition caused by a genetic change in the PIG-A gene). It may help researchers better understand the condition and what care people receive.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have a confirmed diagnosis of PNH, or a diagnosis that doctors think matches PNH
- You (or your legal representative) can provide informed consent
- You can regularly access the internet
- You can complete study tasks done online (like surveys or data entry)
- You can read and understand English
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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This is a long-term registry study for people with a confirmed diagnosis of paroxysmal nocturnal hemoglobinuria (PNH). It simply collects information over time to better understand the condition and how it's managed. There is no experimental treatment involved.
This study asks people with PNH to share their symptoms and experiences from home using a phone or computer. The goal is to learn more about how living with PNH affects everyday life.
This study is for people with paroxysmal nocturnal hemoglobinuria (PNH) who have already taken the experimental drug HSK39297. It checks the long-term safety of continuing the treatment and makes sure it is still helpful.
This trial tests a new pill (MY008211A) for people with paroxysmal nocturnal hemoglobinuria (PNH) who still have low red blood cell counts (anemia) even after taking anti-C5 antibody therapy. The goal is to see if this new drug can raise hemoglobin levels and improve energy.
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This trial is for people who have already completed the Phase 2 study of LP-005 and may continue receiving it. It checks how safe and effective the drug is over a longer period.
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