18 April 2023 saw the launch of a new report ’It’s in Our Genes: Service User Experiences and Feedback on the Communication of Screening Results for Sickle Cell and Thalassaemia’ which was produced from the collaborative project between the Sickle Cell Society (SCS), UK Thalassaemia Society (UKTS) and NHS Sickle Cell and Thalassaemia Screening Programme. The report is based on focus group consultation conducted by SCS and UKTS with users of the screening service, particularly on the communication of newborn screening results. Based on the feedback, the Screening Programme will update its ‘Protocol for Reporting newborn screening results for sickle cell disease to parents’ targeted at health professionals and will this time include useful insight from parents who receive a thalassaemia diagnosis for their newborn child. Download the report here.
