Unique ID issued by UMIN | UMIN000047791 |
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Receipt number | R000054487 |
Scientific Title | The Burden of Illness of Rare Epilepsies (Dravet syndrome, Lennox-Gastaut and Tuberous Sclerosis Complex) in Caregivers in Japan: A Caregiver Burden Study |
Date of disclosure of the study information | 2022/05/18 |
Last modified on | 2023/05/31 15:56:59 |
The Burden of Illness of Rare Epilepsies (Dravet syndrome, Lennox-Gastaut and Tuberous Sclerosis Complex) in Caregivers in Japan: A Caregiver Burden Study
The Burden of Illness of Rare Epilepsy in Caregivers
The Burden of Illness of Rare Epilepsies (Dravet syndrome, Lennox-Gastaut and Tuberous Sclerosis Complex) in Caregivers in Japan: A Caregiver Burden Study
The Burden of Illness of Rare Epilepsy in Caregivers
Japan |
Dravet syndrome, Lennox-Gastaut syndrome, tuberous sclerosis complex
Neurology | Pediatrics |
Others
NO
The objective of this study is to assess and understand the impact of three rare epilepsy conditions on caregivers: Dravet syndrome (DS), Lennox-Gastaut syndrome (LGS), and tuberous sclerosis complex (TSC). To assess the impact of Dravet syndrome (DS), Lennox Gastaut syndrome (LGS), and tuberous sclerosis complex (TSC) on the quality of life (QoL), economic burden, and productivity loss among caregivers of patients with rare epilepsy conditions.
Others
To assess and understand the impact of three rare epilepsy conditions on caregivers
Burden of Caregivers of Three Rare Epilepsy Diseases Based on a Quantitative Questionnaire Survey of Caregivers
Observational
18 | years-old | <= |
Not applicable |
Male and Female
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.
Those who do not meet the inclusion criteria
60
1st name | Michael |
Middle name | |
Last name | LOPRESTI |
INTAGE Healthcare Inc.
Data Science Division
101-0062
Ochanomizu Sola City 13F 4-6 Kanda Surugadai Chiyoda-ku, Tokyo 101-0062, Japan
050-3640-1444
m.lopresti@intage.com
1st name | Michael |
Middle name | |
Last name | LOPRESTI |
INTAGE Healthcare Inc.
Data Science Division
101-0062
Ochanomizu Sola City 13F 4-6 Kanda Surugadai Chiyoda-ku, Tokyo 101-0062, Japan
050-3640-1444
m.lopresti@intage.com
INTAGE Healthcare Inc.
GW Pharmaceutical, plc
Profit organization
United Kingdom
Keiaikai Medical Corporation Saga Memorial Hospital
1240-1 Takagise-cho, Saga City, Saga Prefecture
0952-31-7771
sagakinen8490917@gmail.com
NO
2022 | Year | 05 | Month | 18 | Day |
Unpublished
Completed
2022 | Year | 04 | Month | 04 | Day |
2022 | Year | 04 | Month | 12 | Day |
2022 | Year | 09 | Month | 01 | Day |
2022 | Year | 11 | Month | 30 | Day |
Method: Online questionnaire survey
2022 | Year | 05 | Month | 18 | Day |
2023 | Year | 05 | Month | 31 | Day |
Value
https://center6.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000054487
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