Babies with Patau and Edwards syndrome in neonatal units
Research type
Research Study
Full title
A study of the treatment received and the outcome of babies with Patau and Edwards syndrome who are admitted to a neonatal unit: Analysing data from the National Neonatal Research Database.
IRAS ID
114046
Contact name
Joan Morris
Contact email
Research summary
Edwards and Patau syndrome are, after Down syndrome, the second and third most common autosomal trisomies surviving to birth. Life expectancy for both is much shorter than for Down syndrome as the anomalies associated with these syndromes are more severe. These associated anomalies increase the likelihood of being admitted to a neonatal unit and are associated with medical interventions such as the provision of supplemental oxygen and other forms of breathing assistance and treatments to address feeding issues and hematologic diseases.
This study aims to determine if babies with Edwards or Patau syndrome identified in the National Down Syndrome Cytogenetic Register (NDSCR) can be identified in the National Neonatal Research Database (NNRD), the proportion of babies admitted to a neonatal unit, describe the occurrence of common neonatal events and the treatments they receive and to evaluated the length of stay on a neonatal unit, the need for home oxygen, mode of feeding and weight at discharge.
Data will be obtained from the NNRD on all babies born from 01/01/2008 to 31/12/2011 with Edwards or Patau syndrome. The NNRD stores data from all neonatal units in England at the Chelsea & Westminster NHS Foundation Trust. There is expected to be about 175 babies with Edwards or Patau syndrome. Individual specific information will be extracted on daily events, level of neonatal care, neonatal care characteristics, specific procedures and interventions and information on discharge.
The NDSCR stores data on all diagnoses of Patau and Edwards syndrome from cytogenetic laboratories in England at Queen Mary University of London.
All data will be transferred electronically to Queen Mary University of London where it will be stored and analysed.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
13/LO/1053
Date of REC Opinion
29 Jul 2013
REC opinion
Favourable Opinion