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An Exploration of the Impact of Gene Therapy on the Lives of People With Haemophilia and Their Families — Exigency  

Hemophilia Clinical Trial

Official title:
An Exploration of the Impact of Gene Therapy on the Lives of People With Haemophilia and Their Families

Clinical Trial Summary

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.

Clinical Trial Description

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 Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT04723680
Study type Observational
Source Haemnet
Contact
Status Completed
Phase
Start date August 13, 2020
Completion date February 28, 2023
View Details
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