Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Associated Media:
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:
United Kingdom,Wales
Typical Age Range:
0-4
Follow Up:
Unknown
Pathway:
All pathways pertaining to congenital anomalies
Provenance
Origin
Sources:
EPR
Collection Situations:
- Primary care - Clinic
- Secondary care - In-patients
Temporal
Accrual Periodicity:
Annual
Distribution Release Date:
12 November 2019
Start Date:
01 January 1998
End Date:
19 December 2017
Time Lag:
1-2 months
Accessibility
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.
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.
Delivery Lead Time:
Not applicable
Jurisdictions:
GB
Data Controller:
Public Health Wales NHS Trust
Data Processor:
SAIL Databank
Usage
Data Use Limitations:
- General research use
- Research-specific restrictions
Data Use Requirements:
Project-specific restrictions
Resource Creators:
["Public Health Wales NHS Trust"]
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
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
01 September 2021