Home Reported Outcomes in PNH

Launched by NOVARTIS PHARMACEUTICALS · May 8, 2024

Keywords

ClinConnect Summary

This clinical trial, titled "Home Reported Outcomes in PNH," is studying how patients with Paroxysmal Nocturnal Hemoglobinuria (PNH) experience their symptoms and overall quality of life over time. The goal is to gather information directly from patients in their own homes about their symptoms, how they are managing their treatment, and how their health affects their daily lives. The study also looks at patients taking a specific oral medication called iptacopan. By collecting this real-world data, researchers hope to better understand the challenges faced by people living with PNH.

To participate in this study, individuals must be at least 18 years old, live in the U.S., and be able to read and understand English. Anyone diagnosed with PNH, regardless of their symptoms or treatment history, can join. Participants will be asked to share their experiences and feelings about their health regularly, which will help researchers learn more about the impact of PNH on patients' lives. This study is currently recruiting participants and aims to provide valuable insights into the everyday realities of living with PNH.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• Study participants eligible for inclusion in this study must meet all of the following criteria:
• • Aged 18 or older
• • US-based with a proficient understanding of and ability to read the English language
• • Any patient with a diagnosis of PNH, regardless of symptom or treatment history
• Exclusion Criteria:
• • Study participants who do not fit all inclusion criteria listed above are unable to participate in this study. Outside of required inclusion criteria, there are no other exclusion criteria in order to meet the exploratory nature of the primary endpoint.