History and Funding

The Scottish Linked Congenital Condition Dataset (SLiCCD) was established in 2018. It holds information on babies with major congenital conditions as defined by EUROCAT from birth year 2000 onwards and is based on linkage and analysis of routine national health records. SLiCCD is maintained by the Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS), based within Public Health Scotland (PHS). SLiCCD, and hence CARDRISS, has been an affiliate member of EUROCAT from 2019, and an associate member from 2021.

Population Coverage

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

Sources of Ascertainment

SLiCCD identifies babies affected by anomalies 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 affected by anomalies:

  • 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 anomalies among live born babies 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 may over-ascertain some anomalies, for example, if babies with innocent heart murmurs are wrongly coded to specific forms of congenital heart disease on hospital discharge recordsno specific validation is conducted on ascertained cases, the register may over-ascertain some anomalies, for example, if babies with innocent heart murmurs are wrongly coded to specific forms of congenital heart disease on hospital discharge records
  • the records used by SLiCCD to identify anomaly cases generally contain standard ICD10 codes (to 4 digits). No 5th digit BPA extension codes are available. This means that we cannot ascertain specific anomalies that are identified by 5th digit codes alone. Conversely, we cannot exclude minor anomalies 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 due to anomalies.

Maximum Age at Diagnosis

SLiCCD identifies affected live born infants diagnosed at up to one year of life (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+0 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 cases through linkage and analysis of existing routine records, only minimal variables on ascertained cases 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 anomaly/ies present.

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 has information on all births in Scotland hence can select population-based controls as required for specific analyses using, for example, Scotland’s master patient index (the Community Health Index, CHI, database), statutory birth registration records, or national hospital delivery discharge records.

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 on the register is not required.

External users wishing to access anonymised, patient level data from SLiCCD for research purposes should contact PHS’s research support team (eDRIS).

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/our-areas-of-work/congenital-conditions-and-rare-diseases-registration-information-service-for-scotland-cardriss/overview

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

Last updated 2 May 2023