Experiences of incidentally identified haemoglobinopathy carriers V1.0
Research type
Research Study
Full title
Experiences of individuals identified as carriers of autosomal recessive haemoglobinopathy conditions incidentally through abnormal results in routine blood analysis
IRAS ID
210025
Contact name
Megan H Rogers
Contact email
Duration of Study in the UK
0 years, 8 months, 28 days
Research summary
This project will explore the experiences of people that have been identified as carriers of haemoglobin variants after having routine blood tests such as full blood count or glycosylated haemoglobin (HbA1c) analysis for diabetes. Other studies have reported that carriers of other conditions, such as cystic fibrosis, experience feelings of guilt, anxiety, and altered perceptions of health because of their carrier status. Through face-to-face interviews, this study will investigate the experiences of individuals incidentally identified as haemoglobin variant carriers, the support they received, and how individuals understand and perceive their carrier status. The information gained from this study can also be used to help produce guidelines for clinical practice and improve support services for these individuals.
Adults who have discovered that they carry a haemoglobin variant, such as sickle cell, thalassaemia, and other variants for example haemoglobin C and haemoglobin E, after routine blood tests are eligible for this study. Qualitative interviews will be held at a location convenient to the participant such as the participant’s home or the Sickle Cell & Thalassaemia Centre. Alternatively, participants can opt for a Skype or telephone interview.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
16/YH/0471
Date of REC Opinion
3 Nov 2016
REC opinion
Favourable Opinion