DEEPENS study
Research type
Research Study
Full title
Developing prognostic models using fetal neurosonography (DEEPENS) study
IRAS ID
210071
Contact name
Thomas Jackson
Contact email
Sponsor organisation
Imperial College London and Imperial College Healthcare NHS Trust
Duration of Study in the UK
0 years, 4 months, 1 days
Research summary
In the UK, all pregnant mothers are invited to have an standardised ultrasound scan at 20 weeks gestation to assess for fetal anomalies. If an anomaly is detected in the central nervous system (brain or spinal cord) the mother is referred to a specialist fetal neurology clinic for subsequent scans and counselling about possible outcomes of the pregnancy and support regarding decisions to terminate a pregnancy. In our experience, the vast majority of mothers referred to our clinic decide to continue the pregnancy, but benefit from being able to prepare for the possibility of having the care for a child with a disability, both for themselves and being able to coordinate healthcare services to assess and support the infant. \n\nThere are no scoring systems that provide prognostic information to assist parental counselling after ultrasound scanning. Currently fetal medicine specialists rely on individual assessment, clinical experience and non-standardised published case series/reviews of specific abnormalities to offer prognostic outlook.\n\nOur study would involve mothers and children whom attended our fetal neurology service antenatally in the past 3 years. We would ask mothers to complete a two questionaires, one which screens for neurodisability and the other that assesses the level of function of their child. We would use the survey data in combination with obstetric data to create a model for the prognosis of infants referred to fetal neurology clinics. \n\nWe would then look to validate this model in the future in a larger, multi-centre study before using it in clinical practice to help counsel mothers referred to our clinic.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
17/SW/0028
Date of REC Opinion
7 Feb 2017
REC opinion
Further Information Favourable Opinion