The International PNH Interest Group PNH Registry
Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Patients with PNH confirmed by flow cytometry.
• Patient and/or parent/legally authorized representative provide written informed consent/assent to participate in the registry in a manner approved by the Institutional Review Board/Independent Ethics Committee and local regulations.
Locations
United States
Florida
International PNH Interest Group
RECRUITING
Altamonte Springs
Contact Information
Primary
IPIG Registry Coordinator
registry@pnhinterestgroup.org
Please email
Time Frame
Start Date: 2024-05-10
Estimated Completion Date: 2029-05-10
Participants
Target number of participants: 2000
Treatments
PNH patients not receiving anti-complement treatment
PNH patients of any age who are not receiving any anti-complement treatment
PNH patients receiving anti-complement treatment
PNH patients of any age who are receiving an approved anti-complement treatment
Related Therapeutic Areas
Sponsors
Leads: International PNH Interest Group