Home Reported Outcomes in PNH
Recruiting now
Conditions studied: Paroxysmal Nocturnal Hemoglobinuria
In brief
The study aims to longitudinally capture the full spectrum of symptoms, treatment utilization, and overall Health-Related Quality of Life (HRQoL) experienced by PNH patients. By primarily utilizing home reported outcomes (HRO) data on symptom burden and treatment usage, supplemented with patient-reported outcome (PRO) measures, the study seeks to establish a new real-world data (RWD) source to understand symptom variability and HRQoL among PNH patients, including those receiving orally administered iptacopan.
Key facts
- Study ID
- NCT06411626
- Run by
- Novartis Pharmaceuticals
- People needed
- 128
- Starts
- 2024-06-11
- Expected to finish
- 2026-06-15
- Last updated by the study team
- 2025-08-27
Who can join
Age: 18 and older, up to 99. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- 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.
Where it is running
- Novartis Investigative Site — East Hanover, New Jersey, United States (enrolling)
Full record on ClinicalTrials.gov
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