Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 464 days ago
Congenital Anomaly Register and Information Service (CARS)
Dataset
Summary
Citation:
CITATION INCOMPLETE
Documentation
Description:
CARIS aims to collect reliable data about congenital anomalies that can then be used to help:
- build up and monitor the picture of congenital anomalies in Wales
- assess interventions intended to help prevent or detect congenital anomalies
- plan and co-ordinate provision of health services for affected babies and children
- assess possible clusters of birth defects and their causes
CARIS collects information about any fetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth. It includes babies in whom anomalies are diagnosed at any time from conception to the end of the first year of life. Data collection commenced on 1st January 1998 and includes any baby where pregnancy ended after this date.
CARIS uses a multi-source data collection method using a wide range of sources within the NHS. This ranges from antenatal ultrasound, clinical letters, post-mortems and laboratory results. CARIS also accesses a number of databases including SHIRE (Medical Genetics database), PEDW, NCCHD, Paediatric Cardiology database. Medical records are accessed to confirm, validate and add further details to the information already collected.
Due to the nature of this dataset linkage based on the babies is challenging. This is because many pregnancies (approximately 20% of the total) end in fetal loss or termination. However, linkage based on the mother can be performed.
Coverage
Spatial
Spatial Coverage:
United Kingdom,Wales
Temporal
Start Date:
01 January 1998
End Date:
19 December 2017
Frequency:
Annual
Distribution Release Date:
12 November 2019
Provenance
Source:
EPR
Collection Situation:
Primary care - Clinic, Secondary care - In-patients
Access and Governance
Usage
Condition of Access:
- General research use
- Research-specific restrictions
Condition of Use:
Project-specific restrictions
Resource Creator:
["Public Health Wales NHS Trust"]
Access
Access Service:
The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.
Jurisdictions:
GB
Data Controller:
Public Health Wales NHS Trust
Access Request Cost:
Data provision is free from SAIL. Overall project costing depends on the number
of people that require access to the SAIL Gateway, the activities that SAIL
needs to complete (e.g. loading non-standard datasets), data refreshes,
analytical work required, disclosure control process, and special case
technological requirements.
Data Processor:
SAIL Databank
Format and Standards
Languages:
en
Formats:
SQL database table
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
Approx 70-80% coverage of Welsh population through GP registrations.
3000000
Count
31 August 2021
Origin
Name:
SAIL Databank (Wales)