NCT06524726 The International PNH Interest Group PNH Registry
| NCT ID | NCT06524726 |
| Status | Recruiting |
| Phase | — |
| Sponsor | International PNH Interest Group |
| Condition | Paroxysmal Nocturnal Hemoglobinuria |
| Study Type | OBSERVATIONAL |
| Enrollment | 2,000 participants |
| Start Date | 2024-05-10 |
| Primary Completion | 2029-05-10 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 2,000 participants in total. It began in 2024-05-10 with a primary completion date of 2029-05-10.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief 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 Criteria
Inclusion Criteria: * 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. Exclusion Criteria: * Participating in an interventional PNH clinical trial. Note: A patient included in the registry, who enrolls in an interventional PNH clinical trial during the course of the registry, will be kept in the registry but data collection will be paused in the registry during their involvement in the clinical trial/extension study. Data collection in the registry will continue after patient involvement in the clinical trial/extension study has ended or trial protocol mandated data collection ceases.
Contact & Investigator
Richard Kelly, MBChB PhD
PRINCIPAL INVESTIGATOR
International PNH Interest Group
Frequently Asked Questions
Who can join the NCT06524726 clinical trial?
This trial is open to participants of all sexes, studying Paroxysmal Nocturnal Hemoglobinuria. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT06524726 currently recruiting?
Yes, NCT06524726 is actively recruiting participants. Contact the research team at registry@pnhinterestgroup.org for enrollment information.
Where is the NCT06524726 trial being conducted?
This trial is being conducted at Altamonte Springs, United States.
Who is sponsoring the NCT06524726 clinical trial?
NCT06524726 is sponsored by International PNH Interest Group. The principal investigator is Richard Kelly, MBChB PhD at International PNH Interest Group. The trial plans to enroll 2,000 participants.