SEQaBOO Manchester
Research type
Research Study
Full title
SEQaBOO Manchester: SEQuencing a Baby for an Optimal Outcome in Manchester
IRAS ID
237012
Contact name
Cynthia C. Morton
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
3 years, 7 months, 31 days
Research summary
Millions of infants worldwide undergo newborn screening every year, including screening for hearing loss. These screens aim to identify babies with birth defects and other abnormal conditions, so that doctors can appropriately treat them. The future of newborn screening will include genetic and genomic testing and implementation of these technologies, with transparency for families, will be critical to its success. To this end, SEQaBOO Manchester aims to survey parents whose newborns do not pass universal newborn hearing screening and who are referred for further diagnostic hearing testing, about their knowledge and attitudes concerning genetics. Parents who enrol in SEQaBOO Manchester will be surveyed annually, beginning six months following their baby’s birthdate, to ascertain the general health of their child, including hearing status (whether the newborn passes or fails the diagnostic testing), and their evolving attitudes towards genetics and genomics. Parents whose newborns are determined to have a confirmed hearing loss will also be informed about their potential eligibility to enrol in the Genomics England 100K Genomes Project, for whole genome sequencing. The overall plan of SEQaBOO Manchester will be to assess the value of genomic sequencing in newborn hearing screening, to define better the genetic causes of hearing loss, with an overarching goal of offering better and timelier treatment options for children with hearing loss.
REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
18/NW/0654
Date of REC Opinion
7 Nov 2018
REC opinion
Further Information Favourable Opinion