Building RECOVERY: development of the registry of eating disorders and their co-morbidities OVER time in youth.

Background: Eating disorder (ED) research is limited by the lack of longitudinal cohort studies, particularly those in adolescents, and the lack of inclusion of multiple perspectives and diagnoses. The objective of this study was to describe the development of a longitudinal cohort of adolescents/young adults representing varied ED diagnoses and including perspectives of parents and multi-disciplinary clinicians in addition to those of patients.

Methods: Patients of an outpatient ED program who were age 10-27 years, along with their parents and clinicians, were recruited to participate in a longitudinal web-based study. Using univariate, bivariate, and multivariate analyses, we assessed rates of participation among different groups (i.e., parents, patients, different clinical disciplines) as well as factors related to attrition.

Results: 71% of patients, 75% of parents, 56% of adolescent medicine providers, 20% of primary care physicians, 83% of dietitians, and 80% of mental health clinicians invited agreed to participate. At 12 months, 32% of patient participants had not completed their on-line surveys. Attrition rates were higher for parents (55%) and clinicians (45% of nutritionists, 55% of primary care physicians, 51% of Adolescent/Young Adult providers, and 64% of mental health providers) at 12 months.

Conclusions: A longitudinal registry of patients with EDs is feasible and efficient when using web-based surveys. However, clinician participation is particularly hard to secure and maintain.