Exploring the Hidden Burden of Living with Glanzmann Thrombasthenia
Research type
Research Study
Full title
Exploring the Hidden Burden of Living with Glanzmann Thrombasthenia - A Qualitative Study
IRAS ID
368693
Contact name
Amy Owen-Wyard
Contact email
Sponsor organisation
Hemab Ap
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
This qualitative study explores the hidden emotional, psychological, social, and practical burdens experienced by people living with Glanzmann Thrombasthenia (GT) and their caregivers. GT is a rare autosomal recessive platelet disorder that leads to lifelong bleeding complications, yet the psychosocial dimensions of the condition remain under‑researched. The study seeks to address this gap using semi‑structured interviews with adults with GT and primary or secondary caregivers, including parents, partners, and siblings.
Participation is voluntary, based on transparent informed consent. All individuals aged 16 or older, or younger with parental involvement, may participate if they can understand the study materials and provide consent. Ethical and regulatory compliance include GDPR, HIPAA (where relevant), and the Belmont principles of respect for persons, beneficence, and justice. Local REC/IRB approval will be obtained before data collection begins, and any protocol amendments will undergo ethics review.
Risks to participants are minimal but acknowledge potential emotional discomfort when discussing traumatic bleeding events, stigma, or caregiving strain. Interviewers are trained in trauma‑informed and rare‑disease‑sensitive practice. Participants may pause, skip questions, or withdraw at any time without penalty. A safeguarding and distress management SOP outlines procedures for responding to emotional distress or risk disclosures.
Confidentiality is a core ethical priority. All transcripts are anonymized, audio files are deleted following verification, and data are stored on encrypted, password‑protected servers. Only the research team has access to identifiable information, and all publications will use anonymized quotes to minimise re‑identification risk. Data will be retained securely for ten years before being destroyed.
Participants receive a modest £50 honorarium, designed as appreciation rather than an inducement, and provided regardless of whether the interview is completed. The study poses no clinical risk, collects no experimental data, and aims to generate insights that inform better care, support services, and policy for individuals affected by GT.REC name
North West - Liverpool Central Research Ethics Committee
REC reference
26/NW/0085
Date of REC Opinion
30 Mar 2026
REC opinion
Further Information Favourable Opinion