Avoidant/Restrictive Food Intake Disorder: ARFID InitiativE Sweden (ARIES)

Research problem and specific questions.

Avoidant/restrictive food intake disorder is a serious, taxing, and potentially life-threatening condition that affects 1-5% of the population.

First recognized in 2013, we know little about causes, course, maintenance factors, and outcome; however, nutritional, medical, and psychosocial consequences are severe.

We propose establishing a re-contactable, longitudinal cohort (ARFID InitiativE Sweden: ARIES) to study genetic and environmental contributors to ARFID through a developmental lens.

ARIES will include rich phenotyping, DNA samples, and stool samples in a national data- and biorepository linkable to Swedish population health and quality registers to answer fundamental questions about this pernicious, life-impairing, and understudied condition. Data and method.

We will first form a community-based Parent Advisory Committee (PAC) to guide our assessment domains and then recruit 500 children ages 4-9 with ARFID and 500 age and gender matched controls; collect parental report via online questionnaires on development, feeding history, food preferences, behavior, mood, feeding-related adverse events, and other domains suggested by the PAC; and create a biobank of saliva (for DNA) and stool (for intestinal microbiota and microbiome).

Plan for project realisation.

We will launch a national recruitment campaign using our country-wide collaborations with eating disorders clinicians and pediatricians and our social media channels to reach parents of children with ARFID.

After an online eligibility screen, parents will complete questionnaires; submit saliva samples for their children; and provide a stool sample. Families will enroll in ARIES, agreeing to regular follow-ups.

In addition to baseline research aims, ARIES will enable identification of predictors of transient versus enduring illness course, impact of puberty on ARFID symptoms, and impact of ARFID on educational achievement.

Linking ARIES with population registers will allow research questions about ARFID comorbidity and healthcare utilization. Relevance. No evidence-based treatment for ARFID and no national guidelines exist. Parents desperately seek guidance on managing ARFID and fear for their child’s long-term well-being.

ARIES will be the foundation for understanding ARFID, identifying factors related to onset, maintenance, and outcome, and be a national and international resource for essential research.