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Real-life Treatment Outcomes of Ravulizumab in PNH

Recruiting
Conditions
Paroxysmal Nocturnal Haemoglobinuria
Interventions
Registration Number
NCT06633536
Lead Sponsor
AstraZeneca
Brief Summary

The PNH-RECORD study, a Polish multicenter observational (non-interventional), open-label, retrospective with prospective follow-up.

Detailed Description

PNH-RECORD study aims to aims to collect data on the patients' characteristics and clinical outcomes of ravulizumab administered in the scope of routine clinical practice in PNH.

Recruitment & Eligibility

Status
RECRUITING
Sex
All
Target Recruitment
40
Inclusion Criteria
  1. Adult (aged ≥18) patients with PNH receiving ravulizumab treatment in the frames of NDP in Poland.
  2. Patients willing to participate in the study and signed ICF.
Exclusion Criteria
  1. Those who participated in ravulizumab clinical trial in the past, and/or those who participated/plans to participate in clinical trial on/after the date of first ravulizumab infusion through NDP.
  2. Cognitive incapacity, unwillingness or language barriers precluding adequate understanding or cooperation.

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Arm && Interventions
GroupInterventionDescription
Ravulizumab groupRavulizumabOpen-label
Primary Outcome Measures
NameTimeMethod
Change in LDH levels from index date (first dose of ravulizumab) at every 6 monthup to 36 months
Proportion of patients achieving or remaining at LDH<1.5 ULN at every 6 monthup to 36 months
Secondary Outcome Measures
NameTimeMethod
Proportion of transfusion-free patients from index date at every 6 monthup to 36 months
Number of blood units used per patient-yearup to 36 months
To present patients characteristicsBaseline

Mean body mass index (kg/m²)

To present clinical characteristicsBaseline

Proportion (%) of patients naïve to complement inhibitors

Trial Locations

Locations (1)

Research Site

🇵🇱

Wroclaw, Poland

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