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An Exploration of the Impact of Emicizumab on the Lives of People With Haemophilia and Inhibitors and Their Families

CompletedN/A

Sponsor: Haemnet

Conditions: Hemophilia A With Inhibitor

Interventions: Qualitative Interview

Countries: United Kingdom

This study aims to examine the real-life experience and impact of using emicizumab in a cohort of patients with haemophilia and inhibitors, who were prescribed emicizumab as part of the early access to medicine schema (EAMS),those who have been in clinical trials and those now receiving emicizumab as part of routine haemophilia care. The Investigators also intend to capture the impact of emicizumab use on the lives of close family members (parents/carers/children/partners/siblings). Each participant and his family members will be deemed a study 'dyad'. This is a prospective, observational cohort qualitative research study to be conducted among patients using emicizumab in routine clinical practice. 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 therefore offers insight into how these patients and families cope with haemophilia.

Eligibility overview

Sex: MALE

Age: 8 Years to 100 Years

Healthy volunteers: No

Study type: OBSERVATIONAL

Eligibility criteria

Inclusion Criteria:

* Males
* A diagnosis of Haemophilia A with inhibitors
* Using emicizumab (prescribed by treating clinicians) in usual clinical care.

Exclusion Criteria:

* No history of a Factor VIII inhibitor
* Not currently being treated with emicizumab,
* Does not speak English (for the interviews)
* Does not consent to take part.

Locations (1)

Oxford, Oxfordshire, United Kingdom