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Patient Access Solutions: Epilepsy Partnership Program

Helping more patients with epilepsy find an answer through exome sequencing 

Exome sequencing is recommended by leading medical societies as a first-line test for individuals with epilepsy1. And yet many patients are still receiving narrow tests, such as multigene panels, many of which do not include analysis of all seizure-related genes. In fact, 57% of seizure-related genes are not included on many commercially available epilepsy panels.2 

To help pediatric patients with epilepsy access guideline-backed exome testing, GeneDx has teamed up with leading biopharma partners to offer the Epilepsy Partnership Program. Through this program, denial of an insurance claim or lack of insurance coverage does not impact eligible patients’ ability to access recommended testing.

Who is eligible?

Patients must meet all six criteria 

The Epilepsy Partnership Program is available to patients: 

  1. who reside in the United States 
  2. who are less than 18 years of age 
  3. who experienced their first unprovoked seizure before 8 years of age 
  4. who have not had prior genetic testing performed by a clinical laboratory which confirmed a diagnosis of a neurodevelopmental disorder
  5. whose ordering provider is authorized under applicable law to order genetic testing in the United States 
  6. who have consented to the mandatory data sharing practices stated in the test requisition form (TRF)/provider attestation on the portal 

How does the program work?

The testing works like any other GeneDx exome test order, with a few main differences:

Eligibility

Eligibility criteria must be met. 

Ordering

For portal orders, provide the program code (ESEPL) after adding the exome test to your cart. For paper TRF orders, the Epilepsy Partnership Program-specific TRF must be used.

Data sharing

The ordering provider must confirm that they have consented the patient to the program’s mandatory data practices.

Billing

Should the patient’s insurance provider deny coverage of the exome test, or if the patient is uninsured, our pharma partners will cover the cost of testing.

Data sharing

Our practices aim to protect patients while accelerating the development of epilepsy therapeutics. The Epilepsy Partnership Program is supported by biopharma industry partners who receive the following information:

  • de-identified patient data, such as reportable variants, for patients tested through the program
  • contact information for providers ordering testing through the program

This data plays a critical role in developing novel therapies for patients with epilepsy. Together, we can help shape the future of personalized medicine.

GeneDx will never share any personally identifiable patient information or raw sequencing data with biopharma industry partners. Please see our full privacy policy here.

To learn more about this program and our other Patient Access Solutions, please reach out to your Regional Account Executive or our Client Services team at support@genedx.com or 1-888-729-1206.

Looking for information on how GeneDx collaborates with biopharma to drive therapeutic development forward? Please visit our biopharma page. 

References

  1. Smith L, et al.  J GenetCouns. 2023 Apr;32(2):266-280. 
  2. Butler L, et al. Exome-based testing for patients with seizures: Advantages over panel-based testing. Poster presented at American Epilepsy Society Annual Meeting; December 2, 2023; Orlando, FL.