Unlocking the potential of multidisciplinary clinics to transform rare epilepsies care, insights, and research

Importance: Multidisciplinary clinics (MDCs) improve care for patients with complex, comorbid conditions through coordinated, team-based care. Despite their potential, MDCs remain underutilized and understudied in pediatric neurology, particularly for individuals with rare, chronic epilepsies. Observations: The subject of MDCs in pediatric epilepsy was explored through two workshops and surveys of caregivers and clinicians. MDC models vary widely-from general clinics (e.g., neurology, genetics, and neuropsychology) to disorder-specific clinics with multisystemic specialists. Caregivers identified key barriers, including geographical distance, personal expense, and insurance prior authorization requirements, yet overall reported positive experiences-citing valuable opportunities to participate in research and meaningful changes to clinical care. Although the findings reflect responses from a predominantly white, higher-income, English-speaking group of caregivers recruited through patient advocacy networks-and may therefore carry certain biases-their perspectives remain broadly generalizable to prospective patients across diverse socioeconomic settings. Similarly, physicians identified funding and space as the primary barriers to establishing multidisciplinary clinics, yet a majority recognized the importance of advancing research, translational studies, and clinical trials. Conclusions and relevance: MDCs can improve care for patients with medically complex rare epilepsies by integrating the management of comorbidities. These clinics bring value to both rare patients and physicians by providing a setting for synergistic activities between clinical care, clinical trials, and research. To expand their impact, we recommend: (1) establishing more MDCs using sustainable models; (2) improving access to extend the reach of MDCs; (3) including key specialists for integrated care; (4) sharing disorder-specific expertise through collaboration and training; and (5) tracking standardized success measures to validate and scale these efforts.