Surgical-PEARL
Research type
Research Study
Full title
Surgical Paediatric congEnital Anomalies Registry with Long term follow up (Surgical-PEARL)
IRAS ID
302251
Contact name
Clare Skerritt
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
10 years, 0 months, 0 days
Research summary
Congenital anomalies affect 1 in 64 live births and patients often require surgical interventions to survive. Advances in surgical care mean that even complex anomalies, which were once fatal, now have a prospect of survival into adulthood. The potential causes of congenital anomalies requiring surgical interventions and the factors that affect the anomalies evolve over time are not well understood. It is likely that they occur as a result of a combination of molecular, genetic and environmental risk factors. This study aims to collect data on patients with congenital anomalies potentially requiring surgical correction (CAPRS) from their medical notes and blood, urine and stool samples from patients diagnosed, before or after birth, with one or more congenital anomalies that potentially require a surgical intervention. The main objectives of the study are to evaluate risk factors, identify predictors of clinical outcomes and how to improve medical care to improve the lives of these patients.
The study will also invite the biological parents to contribute one blood and urine samples, as well as to consent to data collection about risk factors from their medical notes and complete questionnaires.
REC name
South East Scotland REC 01
REC reference
22/SS/0004
Date of REC Opinion
15 Mar 2022
REC opinion
Further Information Favourable Opinion