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Global PNH Patient Registry

Recruitingn/aAges any - anyAllAplastic Anemia and MDS International Foundation
NCT05755867 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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 comprehensive understanding of the disease and its course and pace over time. Other registry objectives include the following: * Provide a convenient online platform for participants (or caregivers) to self-report cases of PNH. * Develop a communications registry within the Global PNH Patient registry (e.g., to notify patients of research studies and clinical trials). * Characterize and describe the Global PNH population as a whole, enhancing the understanding of disease prevalence and phenotype as well as the rate of progression of disease characteristics. * Assist the PNH community with the development of recommendations and standards of care. * Be a case-finding resource to be used for researchers

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📋 Eligibility rules (as published)
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.
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What it tests

  • Not listed
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Where

1 site
Aplastic Anemia and MDS International Foundation
Bethesda, United States
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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