Unlocking the potential of multidisciplinary clinics to transform rare epilepsies care, insights, and research
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.
Authors
- Tuesdi Dyer
- Charlene Son Rigby (ORCID: https://orcid.org/0000-0001-8627-996X)
- Jackie Steinberg
- Christal G. Delagrammatikas (ORCID: https://orcid.org/0009-0000-0026-8734)
- Vogel-Farley Vanessa
- Amanda Moore (ORCID: https://orcid.org/0000-0003-2051-1476)
- Carole Bakhos
- Ashley Fortney Point
- Ilene Penn Miller
- Kimberly Wiltrout
- Scott Demarest
- Yssa DeWoody
Institutions
- Boston Children's Hospital (US)
- Reading Museum (GB)
- Children's Hospital Colorado (US)
- Rome Foundation (US)
- Roshydromet (RU)
- Guardian Angel Homes (US)
- Boston Children's Museum (US)
- Epilepsy Foundation (AU)
- University of Colorado Denver (US)
Publication Details
- Journal
- Frontiers in Neurology
- Published
- 2026-02-12
- DOI
- https://doi.org/10.3389/fneur.2026.1619219
- Primary Topic
- Genomics and Rare Diseases
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Citizens United for Research in Epilepsy
- Jazz Pharmaceuticals
- Epilepsy Society