RECRUITING

The International PNH Interest Group PNH Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

The International PNH Interest Group PNH Registry

Quick Facts

Study Start:2024-05-10
Study Completion:2029-05-10
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06524726

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.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Patients with PNH confirmed by flow cytometry.
  2. * 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.
  1. * 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.

Contacts and Locations

Study Contact

IPIG Registry Coordinator
CONTACT
Please email
registry@pnhinterestgroup.org

Principal Investigator

Richard Kelly, MBChB PhD
PRINCIPAL_INVESTIGATOR
International PNH Interest Group
Jeff Szer, MB BS FRACP
STUDY_CHAIR
International PNH Interest Group

Study Locations (Sites)

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

Collaborators and Investigators

Sponsor: 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

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-05-10
Study Completion Date2029-05-10

Study Record Updates

Study Start Date2024-05-10
Study Completion Date2029-05-10

Terms related to this study

Keywords Provided by Researchers

  • PNH
  • Registry
  • Patient Registry
  • Paroxysmal Nocturnal Hemoglobinuria
  • Anemia, Hemolytic
  • Anemia
  • Hematologic Diseases
  • Myelodysplastic Syndromes
  • Bone Marrow Diseases
  • Hemoglobinuria
  • Hemoglobinuria, Paroxysmal

Additional Relevant MeSH Terms

  • Paroxysmal Nocturnal Hemoglobinuria