Clinical Research Participation
Advancements in clinical research depend on the willingness of patients to become study participants, especially in rare diseases such as Wilson disease. However, participation is always voluntary, and anyone considering joining a study should be given the chance to review all aspects of the study before coming to a decision. Primary care physicians (PCPs) can play a vital role in connecting patients with research opportunities and serve as a resource when patients make decisions about study participation. The purpose of this chapter is to provide PCPs and patients with an overview of clinical research (including clinical trials and patient registries), information on rights and responsibilities, and a map to prepare for the informed consent process. Clinical research should be considered a partnership between participants and investigators aimed at the common goal of improving the diagnosis, treatment, and prevention of disease.
KeywordsClinical research Study participation Wilson disease Clinical trials Patient registries Informed consent
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