Ignite Creation Date:
2024-05-06 @ 8:07 PM
Last Modification Date:
2024-10-26 @ 3:20 PM
Study NCT ID:
NCT06257901
Status:
ACTIVE_NOT_RECRUITING
Last Update Posted:
2024-02-14
First Post:
2024-01-25
Brief Title:
A Co-designed Physical Activity Intervention in Fabry Disease
Sponsor:
Brunel University
Organization:
Brunel University
Study Overview
Official Title:
Co-design of a Physical Activity and Sedentary Behaviour Intervention for Adults With Fabry Disease
Status:
ACTIVE_NOT_RECRUITING
Status Verified Date:
2024-08
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
Currently treatments for Fabry disease are pharmacological and predominantly focus on the physical symptoms of the disease In the general population and individuals with disabilities increasing physical activity levels and reducing sedentary time can be an effective non-pharmacological treatment to improve mental health and quality of life Such interventions have not yet been developed or evaluated in people with Fabry disease
The aim of this study is to co-design a physical activity and sedentary behaviour intervention tailored to the needs of adults with Fabry disease The study will seek to gain the expertise of adults with Fabry disease specialist stakeholders physicians cardiologists and clinical nurse specialists and lay specialist stakeholders family and friends of adults with Fabry disease and members of staff and volunteers at the Society for Mucopolysaccharide Diseases A range of views and experiences of physical activity and sedentary behaviour will be explored via focus groups with individuals with Fabry disease and lay specialist stakeholders and semi-structured interviews with specialist stakeholders The information gathered from the focus groups and interviews will then be utilised to inform participatory workshops with individuals with Fabry disease to test intervention concepts Data from these activities will inform the design of a future intervention
The aim of this study is to co-design a physical activity and sedentary behaviour intervention tailored to the needs of adults with Fabry disease The study will seek to gain the expertise of adults with Fabry disease specialist stakeholders physicians cardiologists and clinical nurse specialists and lay specialist stakeholders family and friends of adults with Fabry disease and members of staff and volunteers at the Society for Mucopolysaccharide Diseases A range of views and experiences of physical activity and sedentary behaviour will be explored via focus groups with individuals with Fabry disease and lay specialist stakeholders and semi-structured interviews with specialist stakeholders The information gathered from the focus groups and interviews will then be utilised to inform participatory workshops with individuals with Fabry disease to test intervention concepts Data from these activities will inform the design of a future intervention
Detailed Description:
None
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None