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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

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
JPRN
Registry ID
JPRN-UMIN000054086
Enrollment
100
Registered
2024-04-09
Start date
2024-09-02
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

Hereditary angioedema: HAE

Interventions

None listed

Sponsors

CSL Behring K.K
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: 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

Exclusion criteria

Exclusion criteria: 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

Design outcomes

Primary

MeasureTime frame
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

Secondary

MeasureTime frame
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

Countries

Japan

Contacts

Public ContactHikaru Onishi

INTAGE Healthcare Inc Value & Access Department

onishi.46072@intage.com050-3640-3110

Outcome results

None listed

Source: JPRN (via WHO ICTRP) · Data processed: Jul 3, 2026