Establishment of an international Consortium for Research in Eating Disorders (CoRe-ED): Analysis of early-stage participant involvement and expectations

Abstract

Background: Eating disorders are a major global health concern. However, eating disorders research has been incorrectly labelled by some as "niche" and is critically underfunded throughout the world. With a plan to try to assist in addressing these issues and others, we launched the international not-for-profit Consortium for Research in Eating Disorders (CoRe-ED) in September 2024. CoRe-ED has a global mission to promote innovations in eating disorders research by empowering all voices and ultimately creating new therapies for all people experiencing eating disorders. The aim of the present study was to examine the broad characteristics of the individuals who joined CoRe-ED free of charge and their expected benefits and experiences in the earliest stages of CoRe-ED.

Methods: CoRe-ED registrants completed a written online form between 25 September 2024 and 31 December 2024. As part of this registration process, they consented to deidentified aggregated data being used for research purposes. We analysed the registration data from 252 adult participants, particularly, their primary country of residence, their role(s) (e.g., researcher with lived experience) and their perceived expectations for benefits and experiences using inductive thematic analysis.

Results: The CoRe-ED registrants came from 20 countries across five continents, with Australia being the most common country. The following roles were represented; researchers, health professionals, working in a not-for-profit/advocacy role, lived experience of an eating disorder either personally and/or as a carer/supporter, and working in industry, with researchers being the highest frequency group. Thematic analysis of perceived expectations for CoRe-ED resulted in seven major themes: (1) networking, connecting, and community building (2), research contribution and collaboration (3), learning, staying informed, and professional development (4), raising awareness and advocacy (5), facilitating innovations and advancements in practice and policy (6), sharing lived experience, and (7) gaining international insights and inspiration.

Conclusions: Our findings suggested that our novel international eating disorder research consortium had attracted registrants across multiple continents and groups who broadly wished to network/build a community, contribute to research and receive education. Future research should examine longer term experiences to ensure that expectations are being met and that the broader global mission of CoRe-ED is being addressed.

Keywords: Collaboration; Consortium; Eating disorders; Global; Lived experience; Partners; Research.