Childhood Arthritis and Rheumatology Research Alliance, 555 East Wells Street, Suite 1100, Milwaukee, WI 53202, USA.
Childhood Arthritis and Rheumatology Research Alliance, 555 East Wells Street, Suite 1100, Milwaukee, WI 53202, USA.
Rheum Dis Clin North Am. 2022 Feb;48(1):1-13. doi: 10.1016/j.rdc.2021.09.013.
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.
患儿及其家属参与儿科风湿病学研究，可以确保方案的可接受性、项目相关性，有助于研究的顺利进行，并与社区共享研究结果。研究合作伙伴可以在整个研究过程中进行合作，将个人生活和专业经验融入其中，其角色小到一次性咨询，大到多年的共同领导。患儿及其家属可以在各种地方找到，如诊所、在倡导组织、在社交媒体上，以及通过与现有患儿及其家属的网络联系。患儿及其家属的参与始于建立关系，需要对研究人员和患儿家属进行有效的培训。
