Unique ID issued by UMIN | UMIN000054086 |
---|---|
Receipt number | R000061727 |
Scientific Title | The humanistic burden of hereditary angioedema (HAE): a patient survey in Japan |
Date of disclosure of the study information | 2024/04/09 |
Last modified on | 2024/08/21 14:35:41 |
A survey study of HAE patients: mental QoL and treatment preferences
A survey study of HAE patients: mental QoL and treatment preferences
The humanistic burden of hereditary angioedema (HAE): a patient survey in Japan
The humanistic burden of hereditary angioedema (HAE): a patient survey in Japan
Japan |
Hereditary angioedema: HAE
Clinical immunology | Dermatology |
Others
NO
To evaluate the impact and degree that HAE affects anxiety and depression as well as angioedema-related Quality of Life (QoL) in Japanese HAE patients
Others
HADS, AE-QoL
The impact and degree that HAE affects anxiety and depression as well as angioedema-related quality of life (QoL) in Japanese HAE patients: HADS, AE-QoL
1)The treatment satisfaction in Japanese HAE patients:TSQM-9
2)The impact of HAE on the work productivity and generic health status in Japanese HAE patients:EQ-5D-5L,WPAI-GH
3)Patients' most important factor for deciding medication preference for HAE in Japanese patients
4)The impacts of the demographics, clinical and disease characteristics on HADS in Japanese HAE patients
Observational
12 | years-old | <= |
Not applicable |
Male and Female
Participants must meet all of the following inclusion criteria:
1)Female or male aged >= 12 years, as the date of responding to the survey
2)Self-reported to have been diagnosed with HAE by a physician
3)Able to provide informed consent to participate in the study and willing to participate in the study
Participants who meet any of the following exclusion criteria will be excluded from participation in this study:
1)Participants who are not members of either the HAEJ or CREATE patient groups
2)Participants who have already responded to this study via the other patient group
100
1st name | Naoki |
Middle name | |
Last name | Terasaka |
CSL Behring K.K.
Medical Affairs
107-0061
1-2-3 Kita-aoyama, Minato-ku, Tokyo 107-0061, Japan
070-8702-1080
Naoki.Terasaka@cslbehring.com
1st name | Michael |
Middle name | |
Last name | LOPRESTI |
INTAGE Healthcare Inc
Value & Access Department
101-0062
13F Ochanomizu SolaCity, 4-6 Kanda-Surugadai, Chiyoda-ku, Tokyo 101-0062, Japan
050-3640-1444
m.lopresti@intage.com
CSL Behring K.K
CSL Behring K.K.
Profit organization
Medical Corporation TOUKEIKAI Kitamachi Clinic ERB
1-1-3,Kichijoji-kitamachi,Musashino-shi,Tokyo,180-0001,Japan
03-6779-8116
chi-pr-ec-kitamachi@cmicgroup.com
NO
2024 | Year | 04 | Month | 09 | Day |
Unpublished
Preinitiation
2024 | Year | 03 | Month | 01 | Day |
2024 | Year | 09 | Month | 02 | Day |
2024 | Year | 11 | Month | 24 | Day |
Recruitment method: Participants will be recruited through survey participation requests via email to patients from one HAE patient advocacy group and via postal mail from the other in Japan.
2024 | Year | 04 | Month | 08 | Day |
2024 | Year | 08 | Month | 21 | Day |
Value
https://center6.umin.ac.jp/cgi-open-bin/icdr_e/ctr_view.cgi?recptno=R000061727