Anonymized survey of quality of life and care situation in people with SCN8A/SCN2A-related epilepsy and their caregivers

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00032614

Enrollment

400

Registered

2023-09-04

Start date

2024-10-01

Completion date

Unknown

Last updated

2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

G40.4

Interventions

Group 1: Patients with SCN8A/SCN2A-related epilepsy and their relatives

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: SCN8A/SCN2A-releted epilepsy

Exclusion criteria

Exclusion criteria: None

Design outcomes

Primary

Measure	Time frame
Burden-of-illness (direct and indirect costs - inquired over 3 month period, based on Riechmann et al. Epilepsia 2015)	—

Secondary

Measure	Time frame
Quality-of-life (KIDSCREEN, HADS, BSFC, EQ-5D)	—

Countries

Germany

Contacts

Public ContactAdam Strzelczyk

Goethe-Universität Frankfurt

strzelczyk@med.uni-frankfurt.de+4963017466

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026