Biomaterial Database

Patient Engagement in Pediatric Rheumatology Research. 2022

Vincent Del Gaizo, and Melanie Kohlheim

Childhood Arthritis and Rheumatology Research Alliance, 555 East Wells Street, Suite 1100, Milwaukee, WI 53202, USA. Electronic address: vdelgaizo@carragroup.org.

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.

UI	MeSH Term	Description	Entries
D007857	Leadership	The function of directing or controlling the actions or attitudes of an individual or group with more or less willing acquiescence of the followers.	Influentials
D010358	Patient Participation	Patient involvement in the decision-making process in matters pertaining to health.	Patient Activation,Patient Empowerment,Patient Engagement,Patient Involvement,Patient Participation Rates,Activation, Patient,Empowerment, Patient,Engagement, Patient,Involvement, Patient,Participation Rate, Patient,Participation Rates, Patient,Participation, Patient,Patient Participation Rate
D012108	Research Personnel	Those individuals engaged in research.	Clinical Investigator,Clinical Investigators,Researchers,Investigator, Clinical,Investigators,Investigators, Clinical,Survey Personnel,Investigator,Personnel, Research,Personnel, Survey,Researcher
D002648	Child	A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL.	Children
D006801	Humans	Members of the species Homo sapiens.	Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D012219	Rheumatology	A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis.