Adults with epilepsy endure unnecessary suffering because genetic testing, routine for children, remains rare in clinics despite half of cases tracing to DNA flaws fixable today.
Story Snapshot
- GEAN consortium launches in 2025 to standardize adult epilepsy genetic testing across North America, closing pediatric-adult care gap.
- NAEC guidelines now mandate testing and counseling at epilepsy centers, promising 80% better treatments and 90% seizure cuts.
- Exome sequencing identifies causes in 50% unexplained cases, shifting poor prognosis to precision therapies.
- Multi-center databases will map adult phenotypes of rare genetic epilepsies for trials and holistic care.
- Experts predict a 2026 surge in routine testing for drug-resistant adults.
GEAN Bridges Adult-Pediatric Testing Divide
Elizabeth Gerard, MD at Northwestern Medicine, leads the Genetic Epilepsy in Adults Network (GEAN), sponsored by the American Epilepsy Society (AES). GEAN unites North American adult epilepsy clinics to standardize genetic testing. Pediatric care adopted routine testing years ago due to high yields. Adults lag because many genetic epilepsies persist undiagnosed into adulthood. GEAN builds shared databases and conducts phenotype studies to aggregate rare cases.
GEAN formalized with AES funding in late 2025. Initial projects focus on testing yield data and adult natural history. This collaboration empowers multi-site power for genes too rare for single centers. Gerard stresses unknown adult trajectories for rare genetic diseases demand this work. Common sense aligns: adults deserve the same diagnostic precision as children.
NAEC Mandates Transform Clinic Standards
National Association of Epilepsy Centers (NAEC) released guidelines in 2025 requiring genetic testing, counseling, and education at accredited centers. Exome sequencing serves as first-line for unexplained epilepsies, endorsed by AES and National Society of Genetic Counselors. Data shows 80% of diagnosed patients access better treatments. Up to 90% achieve seizure reductions. These facts ground the mandate in evidence.
Christa Habela presented testing evolutions at the 2025 AES Annual Meeting. Pediatric neurologists highlight seamless transitions lacking in adult care. Providers gain tools via telehealth from GeneDx and Blueprint Genetics panels. Panels target genes like SCN1A for Dravet syndrome. NAEC enforcement standardizes care nationwide.
Genetic Testing Yields Deliver Real Outcomes
Over half of epilepsies link to genetics, per expert consensus. Blueprint Genetics’ Epilepsy Panel covers SCN1A with 718 variants, GRIN2A, FOXG1 for infantile encephalopathies. Brigham and Women’s Hospital integrates routine testing for tailored therapies. Patients shift from drug-resistant misery to precision options. Facts support conservative value of evidence-based medicine over trial-and-error.
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Short-term impacts hit 50% of unexplained cases with diagnostics. Long-term, GEAN defines adult phenotypes for drug trials. Databases enable natural history studies. Economic wins cut misdiagnosis costs. Socially, counseling empowers families. Biotech like Xenon advances targeted trials.
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2026 Predictions Signal Precision Era
Industry forecasts genetic testing surges for newly diagnosed and drug-resistant adults in 2026. Largest-ever studies identify therapeutic targets. GEAN addresses barriers: provider unfamiliarity, test selection. Education trains clinicians on utility. Holistic care encompasses seizures plus quality of life. American values favor self-reliance through knowledge; these tools deliver.
GEAN’s multi-center approach aggregates data for rare epilepsies into adulthood. Predictions rest on pediatric precedents. Ongoing projects promise trial efficiency. Patients transition from poor prognosis narratives to living well. Facts converge: adoption urgency bridges gaps effectively.
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Sources:
https://lampsyhealth.com/blog/5-predictions-for-epilepsy-care-2026-and-beyond
https://www.blueprintgenetics.com/tests/no-test-type/comprehensive-epilepsy-panel
