The International PNH Interest Group PNH Registry

Part of paid clinical trials in Altamonte Springs, Florida.

Sponsor
International PNH Interest Group
Study ID
NCT06524726
Status
Recruiting
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Conditions

  • Paroxysmal Nocturnal Hemoglobinuria

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

The aim of this International PNH Interest Group (IPIG) registry is to develop an international database to prospectively collect data on patients with PNH covering clinical outcomes, patient reported outcomes (PROs), and health-resource utilization (HRU) on all enrolled patients, as well as long term safety data.

Key Dates

Start date
May 10, 2024
Status verified
Jul 2024
Primary completion
May 10, 2029
Completion
May 10, 2029

Study Design

Enrollment
2,000 participants (estimated)

Arms

  • Arm: PNH patients not receiving anti-complement treatment
    PNH patients of any age who are not receiving any anti-complement treatment
  • Arm: PNH patients receiving anti-complement treatment
    PNH patients of any age who are receiving an approved anti-complement treatment

Primary Outcome Measure

Increase knowledge of PNH and describe the PNH patient population [ Time Frame: 5-10 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
International PNH Interest GroupAltamonte SpringsFlorida32714
IPIG Registry Coordinator
[email protected]

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