Member details

Name :

Short name:

Country:

History:

 The register was born out of concern over a landfill site. Data collected through the Office for National Statistics via form SD56 was inadequate to address those concerns. ONS themselves had recognised the inadequacy of their system. In 1995 they commissioned Dame Eva Alberman to report on how to improve ascertainment. The Alberman report recommended the establishment of regional registers. In 1997 the Welsh Office implemented this recommendation in the light of the on-going public concern. The Congenital Anomaly Register & Information Service (CARIS) began data collection in 1998. In 1999 the register was accepted as a member of EUROCAT.  Then in 2005 the register joined ICBDSR. Public Health Wales was established in 2009. Various bodies with a public health function were brought together within Public Health Wales at this time including CARIS . From the start CARIS has collected data from the new-born blood spot screening programme and then from new-born hearing screening programme, when that service was established in 2003. Since 2013 the register has begun to collect a wider range of  data on rare genetic  / hereditary childhood diseases, as part of the implementation of the Wales rare disease plan. This has expanded again since2020 to include adult rare diseases.

Size and coverage::

The register covers the whole of the Principality of Wales, which is one of the 4 constituent parts of the United Kingdom. Wales is just over 20,000 square kilometres in size and has a population of 3.1 million. The number of births ranges between 28,000 - 35,000 and has been declining over the last 5 years.

Legislation and funding:

The collection and publication of the prevalence of congenital anomalies in Wales is a statutory function of Public Health Wales. The register is funded by Public Health Wales.,Key legislation include:,The Data Protection Act 2018,The Health & Social Care 2006 (provisions in this act allow CARIS to collect data without parental consent),General Data Protection Regulation of the EU

Sources of ascertainment:

CARIS uses multiple sources of information to ascertain cases. The principles ones are:,Antenatal ultrasound reports - (electronic system),Fetal medicine clinic letters,Clinical reporting at birth and during infancy,Neonatal intensive care (Electronic system),Newborn blood spot screening,Newborn hearing screening,Cytogenetics,Molecular genetics,Down screening reports (Combined test & NIPT),Paediatric cardiology,Cleft lip & palate service,Paediatric orthorpaedics,Paediatric ophthalmology,National Community Childhealth Database,Patient Episode Database Wales,Public Health England (cross border cases)

Exposure information:

CARIS collects information on:,Maternal use of folic acid,Maternal smoking,Maternal alcohol consumptiom,Maternal drug abuse,Maternal illness before & during pregnancy,Maternal medications taken during pregnancy

Background information:

CARIS collects data on:,Number of previous pregnancies,Family history of congenital anomalies,Age & occupation of mother,Age & occupation of father and maternal BMI

Addresses and staff:

CARIS staff:,Dr Margery Morgan - CARIS lead clinician & obstetrician,Dr Llion Davies - Consultant in Public Health,David Tucker - CARIS Manager, Samantha Fisher - Senior registration officer, Saranne Davies - Registration officer

Phone:

Fax:

E-mail:

International Clearinghouse for Birth Defects

International Clearinghouse for Birth Defects