The Experiences of People Who Live With Glanzmanns Thrombasthenia.

Haemnet

Status: Completed

Conditions: Glanzmann Thrombasthenia

Treatments: Other: survey and interview

Study type: Observational

Funder types: Other; Industry

Identifiers

NCT05315232

Glanzmanns 360

Details and patient eligibility

About

To understand the lived experiences of people with Glanzmanns Thrombasthenia

Full description

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

Enrollment: 122 patients

Sex: All

Ages: Under 100 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

Clinical diagnosis of congenital (inherited) Glanzmanns Thrombasthenia

Exclusion criteria

Acquired Glanzmanns Thrombasthenia

Trial design

122 participants in 2 patient groups

Qualitative assessment

Description:

Survey (using validated quality of life assessment questionnaires) and one to one interviews of people and family members living with Glanzmanns Thrombasthenia

Treatment:

Other: survey and interview

Bleed diary

Description:

Daily bleed diary completion over 12 weeks

Treatment:

Other: survey and interview