The International PNH Interest Group PNH Registry

Description

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.

Conditions

Paroxysmal Nocturnal Hemoglobinuria

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Study Overview

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Study Details

Study overview

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.

The International PNH Interest Group PNH Registry

The International PNH Interest Group PNH Registry

Condition
Paroxysmal Nocturnal Hemoglobinuria
Intervention / Treatment

-

Contacts and Locations

Altamonte Springs

International PNH Interest Group, Altamonte Springs, Florida, United States, 32714

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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.
  • * 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.

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

International PNH Interest Group,

Richard Kelly, MBChB PhD, PRINCIPAL_INVESTIGATOR, International PNH Interest Group

Jeff Szer, MB BS FRACP, STUDY_CHAIR, International PNH Interest Group

Study Record Dates

2029-05-10