Limb Difference: What the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) can tell us

NCARDRS

NCARDRS is a registration service that collects and quality assures data on congenital anomalies and rare diseases in England. NCARDRS forms part of the National Disease Registration Service (NDRS); previously established by Public Health England and now maintained by NHS Digital. Formed in 2015 from existing regional registers, congenital anomaly registration was expanded across the country, standardising data collection, coding and analysis. National coverage is available from 2018.

We report on the development of the national register, using the data to provide live and total birth prevalence estimates of limb differences in England by birth outcome, region, type of condition and over time since 2015. The potential utility of the data will be described and the opportunities for further investigation on long term outcomes using data linkage will be explored.

The expansion of congenital anomaly registration has enabled national surveillance and monitoring of congenital limb conditions and provides a valuable resource for clinicians, researchers and policy makers. The specific challenges facing the ascertainment of limb differences and suggestions as to how the register can develop with the support and engagement of the clinical and patient community will be discussed.

Jenny Broughan

Jenny Broughan is a principal analyst in the National Disease Registration Service (NDRS) at NHS Digital, primarily focusing on the analysis of congenital anomalies collected by the National Congenital Anomaly and Rare Disease Registration Service. She leads and manages a team of analysts working on population-level analysis of congenital anomalies and the evaluation and monitoring of antenatal and new born screening programmes. Jenny began her career with a MSc and PhD in parasite epidemiology, followed by a role working on the epidemiology and surveillance of infectious diseases of veterinary importance. She began working in NDRS six years ago, first leading on regional registration in the South West and then as principal analyst.