Rhythm announces two publications on caregivers of patients with BBS

Rhythm Pharmaceuticals announced two new publications detailing the burden of hyperphagia and obesity for adult caregivers, families and patients living with Bardet-Biedl Syndrome, BBS, based on results of The CAREgiver Burden in BBS, CARE-BBS, study. The research is published in the peer-reviewed journal, The Orphanet Journal of Rare Diseases. “Burden of Hyperphagia and Obesity in Bardet-Biedl Syndrome: a Multi-country Survey,” includes results from a cross-sectional survey of 242 adult caregivers of patients with BBS across the United States, the United Kingdom, Canada and Germany. Caregivers of patients with BBS reported that hyperphagia has broad impacts, well beyond contributing to obesity. Caregivers observed hyperphagic behaviors throughout the day, most frequently negotiating for food and waking up and asking or looking for food during the night. Hyperphagia had at least a moderate negative impact on most patients’ mood/emotions, sleep, school, leisure, and familial relationship. “Caregiver Burden in Bardet-Biedl Syndrome: Findings from the CARE-BBS Study,” quantifies caregiver burden associated with obesity and hyperphagia. The findings show that patients’ hyperphagia had a moderate-to-severe impact on caregiver mood, sleep, and relationships, contributing to a high level of personal strain and work productivity loss for caregivers in the workforce, as well as a meaningful family impact.