Objective:

To characterize the multisystem presentation and care requirements of rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD) syndrome from an interdisciplinary perspective, emphasizing the importance of collaborative care.

Key Findings:

• Six patients (three females and three males) were identified, with a median age at onset of 3.3 years and a median diagnostic delay of 1.6 years.
• Central hypoventilation was a key driver of clinical complexity, with most children progressing to tracheostomy and long-term invasive ventilation.
• Endocrine involvement was multisystemic, frequently associated with electrolyte and metabolic instability.
• Neurodevelopmental concerns were common, with many children developing severe behavioral dysregulation and additional neuropsychiatric symptoms that significantly affected treatment adherence and overall management.
• At the time of data collection, four children had died, predominantly due to cardiorespiratory arrest.

Interpretation:

The clinical complexity of ROHHAD requires coordinated, interdisciplinary care, highlighting the need for ongoing, integrated collaboration to ensure adaptable, individualized care pathways that improve patient outcomes.

Limitations:

• Limited cohort size restricts generalizability of findings and may affect statistical power.
• Real-world data defining patient needs and clarifying the contribution of different specialties remain limited.

Conclusion:

The findings provide novel insights into the management of ROHHAD syndrome, emphasizing the importance of interdisciplinary approaches and the need for further research.