ABSTRACT BACKGROUND Patients with rare diseases have limited access to useful
information to guide treatment decisions. Engagement of patients and other stakeholders in …

Background Community engagement in research is critical to design studies that answer
questions that matter to patients and families and ultimately improve health services …

Background: Despite growing interest in patient engagement in research, there are few
empirical investigations of the nature of engagement and its effects. This information is …

Purpose Patient engagement in research (PER) has recently emerged as a new important
undertaking in health services research. PER encourages meaningful collaboration …

Henry Ford Engagement in research has been shown to enhance the ability of individuals
and communities to address their own health needs and health disparity issues while …

Objective To explore the perspectives of parents of undiagnosed children enrolled in
genomic diagnosis research regarding their motivations for enrolling their children, their …

Background: Efforts to engage patients as partners in health research have grown and
thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) …

Objective Recent legislation mandating the inclusion of children in clinical trials has resulted
in an increase in the number of children participating in research. We reviewed the literature …

There is a consensus that the public should be involved in health research, and Patient and
Public Involvement and Engagement (PPIE) can be at many different stages of research. 1 In …

Despite patient and public involvement (PPI) in paediatric rare disease research being a
challenge, PPI is strongly advocated for clinical research. PPI provides the opportunity for …