The Experiences of People Who Live With Glanzmanns Thrombasthenia.

Completed

• Conditions: Glanzmann Thrombasthenia
• Interventions: Other: survey and interview

• Registration Number: NCT05315232
• Lead Sponsor: Haemnet

Brief Summary

To understand the lived experiences of people with Glanzmanns Thrombasthenia

Detailed Description

A qualitative study of people with Glanzmanns Thrombasthenia including an on-line survey, qualitative in-depth interviews and bleed diary completion.

Study Timeline

• Study First Submitted: 2022-03-15
• Study First Submitted QC: 2022-03-29
• Study First Posted: 2022-04-07
• Study Start: 2022-04-27
• Primary Completion: 2023-04-27
• Study Completion: 2023-04-27
• Status Verified: 2024-03
• Last Update Submitted: 2024-03-12
• Last Update Posted: 2024-03-13

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 122

Inclusion Criteria

Clinical diagnosis of congenital (inherited) Glanzmanns Thrombasthenia

Exclusion Criteria

Acquired Glanzmanns Thrombasthenia

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Qualitative assessment	survey and interview	Survey (using validated quality of life assessment questionnaires) and one to one interviews of people and family members living with Glanzmanns Thrombasthenia
Bleed diary	survey and interview	Daily bleed diary completion over 12 weeks

Primary Outcome Measures

Name	Time	Method
to understand the impact of GT on quality of life of affected individuals and their families.	one year	Incidence of reported impact of GT on daily life using validated questionnaires EQ5D, MIQ, PHQ9, Rosenbergs self esteem scale.

Secondary Outcome Measures

Name	Time	Method
Identify levels of acceptability of current treatments and management approaches	one year	Rate of reported satisfaction with current treatments using self efficacy to manage disease assessment tool
Identify areas of unmet need among people with GT	one year	Rate of reported unmet need using ED5D and MIQ

Trial Locations

Locations (1)

Oxford University Hospitals NHS Foundation Trust; 🇬🇧 Oxford, Oxfordshire, United Kingdom