NCT06524726Recruiting
The International PNH Interest Group PNH Registry
Source: ClinicalTrials.gov · Last updated 29 Jul 2024 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 2000 (estimated)
- First submitted
- 23 Jul 2024
- Start date
- 10 May 2024
- Primary completion date
- 10 May 2029
- Lead sponsor
- International PNH Interest Group
- Diseases
- Myelodysplastic syndromes
- NCT number
- NCT06524726
What you commit to
- Study type: Observational
- Planned participants: 2000
- From 10 May 2024 to the primary completion date, 10 May 2029
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- 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.
Who the study is looking for
- 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.
Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| International PNH Interest Group Coordinator of this site? Confirm its status | Altamonte Springs | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.