Haugen Theresa, Gallop Jennifer L, Doerflinger Hélène
The Center for the Advancement of Art Education, Osage, IA, United States.
Lowe Syndrome Association, Cincinnati, OH, United States.
Front Cell Dev Biol. 2025 Jun 5;13:1610207. doi: 10.3389/fcell.2025.1610207. eCollection 2025.
Lowe syndrome (LS) is a rare genetic disorder leading to significant physical and cognitive impairments. Recognizing the need to bridge the gap between researchers and the LS community, a collaborative patient and public involvement (PPI) project, Lowe Syndrome and Me, was initiated. This initiative aimed to foster understanding, improve communication, and strengthen advocacy through a co-created video series. Researchers from the Gurdon Institute (United Kingdom) and caregivers from the Lowe Syndrome Association (United States) collaborated to develop a series of videos capturing the unique perspectives of patients and their families, advocacy group members, and researchers. Participants received video production and scriptwriting training, ensuring authentic representation and shared ownership of the content. The videos were disseminated through social media, research institute and patient group websites in the United States, United Kingdom and France, raising awareness and improving engagement within the LS community. Feedback from participants highlighted high satisfaction, increased understanding of research, and enhanced communication skills. Challenges included geographical barriers and limited participant diversity, but the project successfully fostered reciprocal learning and strengthened advocacy networks. This case illustrates how meaningful PPI can empower patient communities, enhance research relevance, and promote broader public awareness of rare diseases.
洛氏综合征（LS）是一种罕见的遗传性疾病，会导致严重的身体和认知障碍。认识到有必要弥合研究人员与洛氏综合征患者群体之间的差距，一个名为“洛氏综合征与我”的患者和公众参与（PPI）合作项目启动了。该倡议旨在通过共同创作的一系列视频促进理解、改善沟通并加强宣传。英国古尔登研究所的研究人员与美国洛氏综合征协会的护理人员合作，制作了一系列视频，展现了患者及其家人、倡导组织成员和研究人员的独特视角。参与者接受了视频制作和脚本编写培训，以确保内容的真实呈现和共同所有权。这些视频通过美国、英国和法国的社交媒体、研究机构和患者群体网站进行传播，提高了洛氏综合征患者群体的认知度并增强了参与度。参与者的反馈显示出高度的满意度、对研究的更多理解以及沟通技巧的提升。挑战包括地理障碍和参与者多样性有限，但该项目成功促进了相互学习并加强了宣传网络。这个案例说明了有意义的患者和公众参与如何能够增强患者群体的能力、提高研究的相关性并促进公众对罕见病的更广泛认知。
