Exploring the hidden burden of living with Glanzmann thrombasthenia

Exploring the hidden burden of living with Glanzmann thrombasthenia: a qualitative study

Registry ID
ISRCTN16256452
Source registry
ISRCTN
Status
Recruiting
Study type
OBSERVATIONAL
Sponsor
Equipath Analytics Limited
Enrollment
45
Start date
2026-03-30
Completion date
2027-02-24
Last update
2026-08-17

Conditions

Summary

Glanzmann thrombasthenia

Detailed description

This is a non interventional, observational, qualitative study. The study is funded by Hemab ApS, who have no involvement in study design, data access, analysis, or reporting. The Sponsor (EquiPath Analytics Limited) retains full independence and oversight. This study will use a qualitative, exploratory design appropriate for capturing nuanced experiences. s allow flexibility while ensuring coverage of core areas of interest. The study will follow an interpretivist paradigm, acknowledging that participants’ experiences are shaped by social context. Interviews will be analyzed using Braun & Clarke’s six-phase thematic analysis method, allowing identification of patterns both within and across participant groups. No quantitative data will be collected. No experimental treatments or changes to standard clinical management will occur. Given the rarity of GT and the global geographical distribution of individuals, self reported diagnosis is accepted. This is consistent with qualitative rare disease research, where clinical confirmation is often impractical and unnecessary for experiential exploration.

Interventions

Inclusion criteria

Participants will be eligible if they meet one or more of the following: 1. Individuals with a self-reported diagnosis of Glanzmann’s Thrombasthenia (GT). (Given the rarity of GT and the exploratory qualitative nature of the study, self-reported diagnosis is considered appropriate and proportionate) 2. Primary or secondary caregivers of an individual with GT AND: 3. Can read and understand the participant information sheet 4. Provide informed consent electronically prior to beginning the survey 5. Are aged ≥16 years, or have a caregiver completing the form on their behalf if under 16 6. For participants aged 16–17 years, informed consent will be obtained directly, as they are considered competent to consent to low risk qualitative research. For participants under 16, a parent or legal guardian will provide consent, and the young person will provide assent where appropriate

Exclusion criteria

1. Decline or withdraw consent at any point during the study 2. Inability to comply with study procedures 3. Behavioural concerns that may compromise participant safety or data integrity, as assessed by the research team 4. Individuals unable to provide informed consent

Locations

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