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

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.

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.

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.