Paroxysmal Nocturnal Hemoglobinuria (PNH)

Understanding the Paroxysmal Nocturnal Hemoglobinuria Journey

Status
Recruiting
Study Date (Range)
-
Bone Marrow Disease(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Age Group
21 years and older
The purpose of this study is to better understand the treatment journey and experiences of people living with Paroxysmal Nocturnal Hemoglobinuria (PNH), specifically those currently in a “watch and wait” period after being diagnosed.

PLEDGE – Patients’ Long-term Experience on VOYDEYA (Danicopan): Gathering Evidence in the Real-World

Status
Recruiting
Study Date (Range)
-
Bone Marrow Disease(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Age Group
18 years and older
The IRB-approved observational Phase IV PLEDGE study is set-up to collect real-world data on adult patients with Paroxysmal Nocturnal Hemoglobinuria (PNH) with symptomatic extravascular hemolysis who recently started VOYDEYATM (danicopan) as add-on treatment to ULTOMIRIS®…

Iptacopan Yields Meaningful Hemoglobin Improvements in Pretreated PNH Group

Original Publication Date
Article Source
External Web Content
Data from APPULSE-PNH may support oral iptacopan as a potentially practice-changing option in patients with paroxysmal nocturnal hemoglobinuria. "Results from APPULSE-PNH and previous trials establish oral iptacopan monotherapy as a potentially practice-changing treatment capable…

Treatment patterns and blood count control in 10,112 patients with polycythemia vera

Original Publication Date
Article Source
External Web Content
ABSTRACT Background Elevated blood counts in polycythemia vera (PV) are associated with increased thrombotic risk, which contributes to morbidity and mortality. Research design and methods This retrospective study describes treatment patterns and blood count control in patients…

Nutrition for Patients with Aplastic Anemia, MDS, or PNH

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Aplastic Anemia
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
In this webinar, Kylie Chen, Registered Dietitian, discusses common nutrition challenges and evidence-based strategies to improve nutritional status and learn easy nutrition swaps.
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