Actively Recruiting

Age: 18Years - 99Years
All Genders
NCT06411626

Home Reported Outcomes in PNH

Led by Novartis Pharmaceuticals · Updated on 2025-08-27

128

Participants Needed

1

Research Sites

104 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

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.

CONDITIONS

Official Title

Home Reported Outcomes in PNH

Who Can Participate

Age: 18Years - 99Years
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Aged 18 or older
  • US-based and able to read and understand English
  • Diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH), regardless of symptoms or treatment history
Not Eligible

You will not qualify if you...

  • Not meeting all the inclusion criteria above

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 1 location

1

Novartis Investigative Site

East Hanover, New Jersey, United States, 07936

Actively Recruiting

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Research Team

N

Novartis Pharmaceuticals

CONTACT

N

Novartis Pharmaceuticals

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

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Home Reported Outcomes in PNH | DecenTrialz