CARES
Research type
Research Study
Full title
Haemophilia Carriers’ Experience Study: Life Choices, Psychosocial Needs and Parenting
IRAS ID
198207
Contact name
Sarah Mangles
Contact email
Sponsor organisation
Hampshire Hospitals NHS Foundation Trust
Duration of Study in the UK
2 years, 0 months, 28 days
Research summary
The objective of this study is to explore the experience of being a carrier of haemophilia. We want to develop a better understanding of mood, self-perception, relationships, and general wellbeing as well as the decision-making process carriers face when deciding whether to have a family, or further children after a child with haemophilia.
This study aims to develop and validate a questionnaire measure to evaluate carriers’ needs informed by focus groups that form part of the study. The questionnaires aim to test out the significance of the insights gained through the focus groups.
REC name
London - Brent Research Ethics Committee
REC reference
16/LO/1212
Date of REC Opinion
27 Jun 2016
REC opinion
Favourable Opinion