From establishment to network consolidation: Registrant engagement and collaborative development in the international Consortium for Research in Eating Disorders (CoRe-ED).

内容摘要

Eating disorders are a global health concern, yet research in this field has historically been underfunded and sometimes perceived as "niche". To attempt to address these challenges, the international charity Consortium for Research in Eating Disorders (CoRe-ED) was launched in September 2024. CoRe-ED aims to promote innovations in eating disorders research by empowering all voices and supporting the development of new therapies. The present study examined the characteristics of individuals who joined CoRe-ED over the first ~ 15 months, their engagement with consortium initiatives and their expected benefits and experiences. Between 25 September 2024 and 31 December 2025, CoRe-ED registrants completed an online registration form and consented to the use of deidentified, aggregated data for research. Data were analysed for registrant characteristics, including primary country of residence and role(s) (e.g., researcher, health professional, lived experience), and for perceived expectations and experiences, using inductive thematic analysis. Survey feedback from ten CoRe-ED events, engagement with collaborative CoRe-ED initiatives, and an overarching survey capturing overall registrant experiences were also analysed. A total of 960 individuals from 37 countries across five continents registered with CoRe-ED, representing researchers, health professionals, individuals with lived experience, advocates, not-for-profit representatives and industry professionals. Registrants' expectations included networking and community building, research contribution and collaboration, learning and professional development, advocacy, facilitation of innovation, integration of lived experience into research, global collaboration and mentorship. CoRe-ED also implemented a structured "Next Big Research Idea" initiative, which involved 18 internationally distributed multidisciplinary teams across 20 countries in collaborative research proposal development. Event-specific and overall feedback indicated high satisfaction with CoRe-ED activities, particularly valuing the diversity of presenters, global perspectives, inclusive environment and opportunities to learn and connect. Over the first ~ 15 months, CoRe-ED engaged a diverse, international registrant group and developed activities consistent with early registrant expectations. The consortium implemented initiatives intended to support cross-disciplinary research collaboration, knowledge exchange and innovation, while expanding international representation. Future research should examine longer-term experiences, including impacts on research outputs, mentorship, co-design and policy translation, to better understand how the consortium evolves in response to the needs of its international community. Eating disorders are a global health concern, but research and support in this area are limited. To attempt to address this, the international charity Consortium for Research in Eating Disorders (CoRe-ED) was launched in September 2024 to bring together people from different countries, professions and experiences. Over the first ~ 15 months, 960 individuals from 37 countries joined, including researchers, health professionals, people with lived experience, advocates, not-for-profit workers and industry representatives. Registrants reported wanting to build networks, contribute to research, access learning and professional development, engage in advocacy, support innovation, integrate lived experience into research, participate in global collaborations and receive mentorship. CoRe-ED also launched a “Next Big Research Idea” initiative, which brought together 18 multidisciplinary teams across 20 countries to develop collaborative eating disorders research proposals. Feedback on events and the overall consortium was very positive, with registrants highlighting the diversity of presenters, inclusive environment, global perspectives and learning opportunities. These findings potentially suggest CoRe-ED engaged a diverse, international group and implemented initiatives aligned with registrants’ expectations. Future research should examine longer-term experiences to better understand how the consortium responds to the needs of its international community.