The Burden of Illness of Rare Epilepsies (Dravet syndrome, Lennox-Gastaut and Tuberous Sclerosis Complex) in Caregivers in Japan: An Emotional Journey Study

The Burden of Illness of Rare Epilepsies (Dravet syndrome, Lennox-Gastaut and Tuberous Sclerosis Complex) in Caregivers in Japan: An Emotional Journey Study - The Burden of Illness of Rare Epilepsy in Caregivers

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

JPRN

Registry ID

JPRN-UMIN000047531

Enrollment

Registered

2022-04-21

Start date

2022-04-20

Completion date

Unknown

Last updated

2026-06-29

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

Conditions

Dravet syndrome, Lennox-Gastaut syndrome, tuberous sclerosis complex

Interventions

None listed

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: [Physicians] Physician participants must meet ALL of the following criteria to be considered for enrollment: .A licensed and practicing physicians in Japan .3 or more year of experience in practice .Pediatrician or neurologist .Treating 3 or more patients in total among the three conditions (DS, LGS, and/or TSC) that are being treated for epilepsy symptoms Supplemental: Includes patients who are not currently experiencing epilepsy symptoms due to epilepsy treatment. [Caregivers] Caregiver participants must meet ALL of the following criteria to be considered for enrollment: .Aged 18 or older .Born in and currently reside in Japan .Caregivers of patients with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS) or tuberous sclerosis syndrome (TSC) .Caregivers of patients who have had a diagnosis of the disease for at least 12 months .Caregivers of patients currently receiving treatment for epilepsy symptoms Supplemental:Includes patients who are not currently experiencing epilepsy symptoms due to epilepsy treatment.

Exclusion criteria

Exclusion criteria: Those who do not meet the inclusion criteria

Design outcomes

Primary

Measure	Time frame
The impact of three rare epilepsy conditions on caregivers as reported qualitatively by physicians and caregivers	—

Countries

Japan

Contacts

Public ContactMichael LOPRESTI

INTAGE Healthcare Inc. Data Science Division

m.lopresti@intage.com050-3640-1444

Outcome results