This study programme aims to examine the real-world experience and impact of gene therapy in a diverse community of people and families affected by haemophilia who have been or will be exposed to gene therapy.
This is a prospective observational multiple cohort qualitative research study to be conducted among diverse groups within the haemophilia community whose lives may have been impacted by gene therapy. The study is designed to allow English-speaking patients and their families to tell their own life stories through narrative accounts. The narratives represent a true sharing of experiences and offer insight into how these patients and families cope with haemophilia.
Study Type
OBSERVATIONAL
Enrollment
69
Qualitative semi structured interview
Oxford University Hospitals NHS Foundation Trust
Oxford, Oxfordshire, United Kingdom
patient expectations
To explore the expectations that patients, and families in the UK have of gene therapy and its position in contemporary and future haemophilia management
Time frame: Each participant & family member will take part in a 1 hour semi structured qualitative interview where his experiences of his condition, previous treatment & experience of gene therapy will be discussed & analysed using a grounded theory approach
Lived experience
To understand the lived experience of people who have undergone gene therapy
Time frame: Each participant & family member will take part in a 1 hour semi structured qualitative interview where his experiences of his condition, previous treatment & experience of gene therapy will be discussed & analysed using a grounded theory approach
Impact of gene therapy
To understand the as yet "unseen" impact of gene therapy on the extended family
Time frame: Each participant & family member will take part in a 1 hour semi structured qualitative interview where his experiences of his condition, previous treatment & experience of gene therapy will be discussed & analysed using a grounded theory approach
Impact of ineligibility
To understand the impact of ineligibility for gene therapy trials
Time frame: Each participant & family member will take part in a 1 hour semi structured qualitative interview where his experiences of his condition, previous treatment & experience of gene therapy will be discussed & analysed using a grounded theory approach
Impact of withdrawal
To understand the impact of withdrawal from gene therapy on individuals and their ongoing attitude to their haemophilia care
Time frame: Each participant & family member will take part in a 1 hour semi structured qualitative interview where his experiences of his condition, previous treatment & experience of gene therapy will be discussed & analysed using a grounded theory approach
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Why not interested
To understand why some patients and families opt not to participate in gene therapy trials as a treatment option
Time frame: Each participant & family member will take part in a 1 hour semi structured qualitative interview where his experiences of his condition, previous treatment & experience of gene therapy will be discussed & analysed using a grounded theory approach