Patient-centered pharmacovigilance: priority actions from the inherited bleeding disorders community.

ABSTRACT: Pharmacovigilance, the science and practice of monitoring the effects of medicinals and their safety, is the responsibility of all stakeholders involved in the development, manufacture, regulation, distribution, prescription, and use of drugs and devices. The patient is the stakeholder most impacted by and the greatest source of information on safety issues. It is rare, however, for the patient to take a central role and exert leadership in the design and execution of pharmacovigilance. Patient organizations in the inherited bleeding disorders community are among the most established and empowered, particularly in the rare disorders. In this review, two of the largest bleeding disorders patient organizations, Hemophilia Federation of America (HFA) and National Hemophilia Foundation (NHF),

SUBMITTER: Robinson F 

PROVIDER: S-EPMC9969430 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature