Ensuring longevity and accessibility of data and biological samples from over 24,000 participants at the Centre for Eating Disorders Innovation (CEDI)

Between 2014 and 2024, a multidisciplinary team of investigators at the Centre for Eating Disorders Innovation (CEDI) at Karolinska Institutet collected extensive clinical and self-report data and biological samples for genomic and other -omic studies from over 24,000 individuals with eating disorders (anorexia nervosa, bulimia nervosa, binge-eating disorder, atypical anorexia nervosa, and avoidant restrictive food intake disorder) and appropriately matched controls.

CEDI studies were funded by Swedish (e.g., Swedish Research Council, FORTE, Hjärnfonden, ALF); Danish (Lundbeckfonden); American (National Institute of Mental Health); industry (Shire/Takeda); and philanthropic sources (e.g., Klarman Family Foundation, Actum Foundation)—an unprecedented investment in eating disorders science.CEDI data and samples represent a global resource that is poised to answer future questions about the biology, psychology, and environmental factors that influence risk, maintenance, and recovery from eating disorders and co-occurring conditions such as depression, anxiety, and obsessive-compulsive disorder.

Moreover, our discovery of a metabolic genetic component to anorexia nervosa lends our data and samples to investigations of conditions of global public health relevance such as obesity and type 2 diabetes. No eating disorders collection in the world rivals the depth and completeness of our resource.

To ensure its longevity, utility, and accessibility in accord with FAIR principles, we propose the development of CEDIX—a comprehensive, harmonized, searchable database comprising data and metadata from all CEDI studies linked with a searchable and accessible biobank of DNA, saliva, microbiome, plasma, and other study-specific biological samples housed in the KI Biobank.

We will develop and systematize a self-supporting scheme for requesting data and sample access; for verifying ethical approval and GDPR compliance; and a mechanism for growing CEDIX by requiring deposit of created variables and novel findings back into the database.

FORTE support would provide the personnel and infrastructure to refine, thoroughly test, and publicize availability of the resource.

CEDIX and its biorepository will be an invaluable resource for current researchers as well as future global investigators who develop novel hypotheses and apply emerging methodology to address etiology, treatment, recovery, and relapse of these life-impairing and too frequently fatal conditions.