The Experiences of People Who Live With Glanzmanns Thrombasthenia.

Glanzmanns 360. The Lived Experience of People With Glanzmanns.

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT05315232

Enrollment

122

Registered

2022-04-07

Start date

2022-04-27

Completion date

2023-04-27

Last updated

2024-03-13

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Glanzmann Thrombasthenia

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.

Interventions

OTHERsurvey and interview

qualitative assessment

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

0 Years to 100 Years

Healthy volunteers

Inclusion criteria

Clinical diagnosis of congenital (inherited) Glanzmanns Thrombasthenia

Exclusion criteria

Acquired Glanzmanns Thrombasthenia

Design outcomes

Primary

Measure	Time frame	Description
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

Measure	Time frame	Description
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

Countries

United Kingdom

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026