Association between quality of life and changes in outdoor temperature in patients with Fabry disease: a longitudinal observational study

Association between quality of life and changes in outdoor temperature in patients with Fabry disease: a longitudinal observational study - Fabry disease quality of life and changes in outside temperature

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

JPRN

Registry ID

JPRN-UMIN000055144

Enrollment

Registered

2024-09-01

Start date

2024-09-01

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

Fabry disease

Interventions

None listed

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1) Age must be 18 years or older at the time consent is obtained. 2) 30 participants for each disease type (classic, late onset, and female heterozygous). 3) Participants with a diagnosis of Fabry's disease.

Exclusion criteria

Exclusion criteria: 1) Those who are hospitalized for acute diseases 2) Persons with cognitive impairment or intellectual disability who do not have the ability to answer the questionnaire on their own, or who are suspected to have such impairment. 3) Other persons who are deemed inappropriate as research participants by the principal investigator.

Design outcomes

Primary

Measure	Time frame
Factor scores on the adult Fabry disease-specific quality of life scale (AFQOL) every 3 months.	—

Secondary

Measure	Time frame
SF-8 score to be measured at the time of the initial survey	—

Countries

Japan

Contacts

Public ContactYuta Koto

Kansai Medical University Faculty of Nursing

kotoy@hirakata.kmu.ac.jp072-804-0095

Outcome results