Status:
RECRUITING
Global PNH Patient Registry
Lead Sponsor:
Aplastic Anemia and MDS International Foundation
Collaborating Sponsors:
National Organization for Rare Disorders
Conditions:
Paroxysmal Nocturnal Hemoglobinuria
Eligibility:
All Genders
Brief Summary
The primary aim of the Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry is to conduct a prospectively-planned and efficient natural history study that will result in a more comprehens...
Detailed Description
The Global PNH Patient Registry is a prospective, longitudinal, web-based, observational natural history study. Participants with PNH will be followed throughout the course of their lives with either ...
Eligibility Criteria
Inclusion Criteria:
- Individuals of any age with a confirmed diagnosis of PNH or diagnosis consistent with PNH are eligible for inclusion. PNH is defined as a genetic mutation in the PIG-A gene.
Individuals must be willing to provide informed consent. Participants can be:
- legal adult participants who are able to provide their own consent;
- children and adults unable to provide their own consent, for whom consent must be provided by a Legally Authorized Representative (LAR) who is a legal adult.
- Individuals must have at least periodic access to the internet and be able to comply with web-based study procedures and data collections
Exclusion Criteria:
- Individuals not able to read and understand English.
Key Trial Info
Start Date :
May 6 2021
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
May 6 2031
Estimated Enrollment :
500 Patients enrolled
Trial Details
Trial ID
NCT05755867
Start Date
May 6 2021
End Date
May 6 2031
Last Update
February 20 2025
Active Locations (1)
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1
Aplastic Anemia and MDS International Foundation
Bethesda, Maryland, United States, 20814