NETS2HD-Six year outcomes for children with Hirschsprung's Disease
Research type
Research Study
Full title
Next stage in Evidence-based paediatric surgical Treatment Strategies 2 - Hirschsprung's Disease (NETS2HD). A nationwide cohort study investigating the impact of choice of surgical intervention on core outcomes at six to seven years of age in children with Hirschsprung's Disease.
IRAS ID
202042
Contact name
Benjamin Allin
Contact email
Sponsor organisation
University of Oxford
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Hirschsprung's Disease is a condition where the nerves within the bowel don't develop properly, resulting in the infant being unable to open their bowels. Early in life, affected infants usually require an operation called a ‘pull-through procedure’. There are multiple types of pull-through procedures and the choice of operation may affect an infant’s continence and bowel function, which in turn, may impact on other aspects of the child's life such as school performance and social interactions. The aim of the NETS2HD study is to investigate whether the type of operation a child underwent affects their health and wellbeing as they reach school age. This study is funded by the NIHR.
Between 01/10/10 and 31/03/2012, anonymised details of 305 infants were reported to the British Association of Paediatric Surgeons Congenital Anomalies Surveillance System as having been diagnosed with Hirschsprung’s Disease. These infants were identified from all 28 paediatric surgical centres in the UK, and will form the participants for the NETS2HD study. The study will run from 01/06/17 to 31/05/18, and will involve collection of information through parent and clinician completed questionnaires when children are between six and seven years of age. The health and wellbeing aspects to be studied are those which people with Hirschsprung’s Disease, their parents and health professionals have identified as important. These include faecal incontinence, bowel function, and quality of life. Data reported in the NETS2HD study will be linked to clinician reported data collected in the BAPS-CASS studies.
This study will be the first to investigate the relationship between choice of pull-through procedure and key parent reported school-age health and wellbeing outcomes in a UK-wide cohort of children with Hirschsprung’s Disease. This information will be used to counsel future parents and may inform development of a randomised controlled trial of different operation types.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
17/SC/0152
Date of REC Opinion
24 Apr 2017
REC opinion
Favourable Opinion