History and Funding

The Scottish Linked Congenital Conditions Dataset (SLiCCD) is held by Public Health Scotland. SLiCCD contains information on babies in Scotland with major congenital conditions as defined by EUROCAT from pregnancies ending in 2000 to 2020 inclusive. SLiCCD is based on linkage and analysis of routine national health records held by Public Health Scotland (PHS). SLiCCD is an associate member of EUROCAT.

For pregnancies ending in 2021 onwards, SLiCCD has been superseded by the Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS) register.

Population Coverage

SLiCCD covers all pregnancies ending within Scotland, irrespective of the usual place of residence of the mother. The annual number of births covered by the register is 48-60,000.

Sources of Ascertainment

SLiCCD identifies babies affected by congenital conditions through analysis of a wide range of existing national datasets. The datasets used include ones that are statutory/compulsory (e.g. vital event notification, termination of pregnancy notification) and non-statutory/voluntary (e.g. hospital discharge records). All datasets used have high coverage and data quality.

The following existing national datasets are linked together to identify babies with congenital conditions:

  • statutory live birth registration records
  • statutory stillbirth registration records
  • statutory infant death records (up to infant’s first birthday)
  • statutory termination of pregnancy records
  • maternity hospital discharge records
  • neonatal care hospital discharge records
  • general hospital discharge records (up to infant’s first birthday)
  • perinatal death enhanced surveillance records.

 

The following specific features of SLiCCD should be noted by potential data users:

  • SLiCCD will under-ascertain live born babies with conditions that do not necessitate admission to neonatal or paediatric care (or lead to death) during the baby’s first year of life
  • as no specific validation is conducted on ascertained cases, SLiCCD over-ascertains babies with some conditions. For example, if babies with innocent heart murmurs are wrongly coded to specific forms of congenital heart disease on hospital discharge records they will be included in SLiCCD. Similarly, babies with positional talipes equinovarus (which is not registerable) as well as structural talipes equinovarus (which is registerable) will be included in SLiCCD if the same code is used on source records
  • the records used by SLiCCD to identify babies with relevant conditions generally contain standard ICD10 codes (to 4 digits). No 5th digit BPA extension codes are available. This means that we cannot ascertain specific conditions that are identified by 5th digit codes alone. Conversely, we cannot exclude minor conditions that are identified by 5th digit codes alone
  • there are some specific limitations to our ascertainment of spontaneous fetal losses at 20-23 weeks gestation.

Maximum Age at Diagnosis

SLiCCD identifies affected live born infants diagnosed at up to one year of age (i.e. before their first birthday).

Terminations of Pregnancy for Fetal Anomaly (TOPFA)

Termination of pregnancy for fetal anomaly has been legal in Scotland since 1968 (performed under the terms of the Abortion Act 1967).

There is no upper gestational limit for TOPFAs in Scotland. Under the terms of the Abortion Act 1967, a termination can be performed at any gestation if ‘there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’.

Prenatal screening policy

The programme of pregnancy screening offered to all pregnant women through Scotland’s National Health Service (NHS) is described here.

All nationally recommended screening tests are available free at the point of delivery through the NHS.

Stillbirth and Early Fetal Deaths

In Scotland, babies born at ≥24+0 weeks gestation showing no signs of life are statutorily registerable as a stillbirth. The only exception is if the baby is known to have died at less than 24 weeks (in which case statutory registration is not required).

In line with EUROCAT guidance, SLiCCD includes spontaneous late fetal losses at 20-23 weeks gestation (in additional to spontaneous stillbirths at ≥24 weeks as noted above). These late fetal losses are ascertained through maternity hospital discharge records and perinatal mortality enhanced surveillance records.

Exposure Data / Availability

As SLiCCD ascertains babies with relevant conditions through linkage and analysis of existing routine records, only minimal variables on ascertained babies are retained within the linked dataset. These include identifier and demographic variables relating to the affected baby and mother and ICD10 coded information on the condition(s) present (which are taken directly from the source datasets, with no further validation applied).

None of the exposure variables as specified in the EUROCAT dataset are held within SLiCCD. However, as PHS holds a wide range of other datasets, linkage of SLiCCD data to other datasets can be undertaken (given appropriate governance approvals) to provide additional information on potential exposures and outcomes.

Denominators and Controls Information

PHS maintains a population-based dataset of all recognised pregnancies (and, where applicable, the resulting live births) to women in Scotland: the Scottish Linked Pregnancy and Baby Dataset (SLiPBD). PHS can select babies without congenital conditions from SLiPBD if population-based controls are required for specific analyses.

Ethics and Consent

PHS operates under the terms of The Public Health (Scotland) Order 2019 and Public Health etc. (Scotland) Act 2008. PHS also has a legal obligation under The Official Statistics (Scotland) Order 2008, the Official Statistics (Scotland) Amendment Order 2019 and the Statistics and Registration Service Act 2007 to produce National and Official statistics.

PHS’s Caldicott Guardian and Data Protection Officer have approved the data linkage and analysis required to create SLiCCD. PHS maintains SLiCCD as part of its public task. Parental consent to include children in the dataset is not required.

External users wishing to access anonymised, patient level data from SLiCCD for research purposes should contact Research Data Scotland.

Potential data users will be required to apply to Scotland’s Public Benefit and Privacy Panel for approval prior to data being provided.

Address for Further Information

Director, Dr. Rachael Wood

CARDRISS,
Public Health Scotland,
Gyle Square,
1 South Gyle Crescent,
Edinburgh EH12 9EB,
Scotland,
United Kingdom

Email:
phs.cardriss@phs.scot

Web:
https://publichealthscotland.scot/cardriss

https://publichealthscotland.scot/publications/congenital-conditions-in-scotland

Last updated 19 August 2025