Study of Rare Obesity Types with Food Behavior Disorders to Improve Diagnosis and Treatment

What this Trial Is About

This research aims to better understand hypothalamic obesity HO, a rare form of obesity caused by damage or malfunction in the hypothalamus, which controls energy balance. HO includes cases linked to hypothalamic lesions like craniopharyngioma and genetic causes such as Prader-Willi syndrome or mutations affecting the leptinmelanocortin pathway. HO leads to severe obesity combined with eating disorders, cognitive and behavioral challenges, endocrine and metabolic problems, and sometimes vision loss, greatly impacting quality of life and health outcomes. Currently, no specific treatment exists for HO, and clinical management mainly focuses on behavioral support for eating and physical activity. The study observes two groups one includes adults and children with severe obesity and genetic diagnoses related to eating disorders, and the other includes those with obesity or eating disorders caused by hypothalamic lesions. Participants receive ongoing care and assessments but no experimental drugs or treatments are administered, as this is an observational study. The goal is to improve early diagnosis, understand the natural progression of HO, and identify lifestyle patterns and health markers to personalize future care and guide innovative treatments. Participants will be followed for up to 20 years with regular evaluations occurring every 3 to 5 years depending on age. Assessments include measuring weight, height, calorie intake, eating behaviors such as hyperphagia and binge eating, physical activity, body composition, metabolic and cardiac function, neuropsychological testing, quality of life, and other health parameters. Data collected will help characterize the clinical and genetic profiles of HO to support better diagnosis, prognosis, and future therapeutic approaches.

Rare Obesity Cohorts With Food Behavioral Disorders : Better Diagnosis for Better Treatment