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Patient Engagement in Pediatric Rheumatology Research
Vincent Del Gaizo1, Melanie Kohlheim1
1Childhood Arthritis and Rheumatology Research Alliance, 555 East Wells Street, Suite 1100, Milwaukee, WI 53202, USA.
Abstract:
Patient engagement in pediatric rheumatology research can ensure protocol acceptability, project relevance, facilitate a successful study, and share results with the community. Research partners can collaborate along the entire continuum of research, contributing both lived and professional experience with roles as small as a single point-in-time consultation to as large as multi-year shared leadership. Patient and caregiver partners can be found in the myriad of places-the clinic, in advocacy organizations, on social media, and through networking with existing patient partners. Patient engagement begins with relationship building and requires effective training of both researcher and patient family.
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