History and Funding

The Scottish Linked Routine Data Congenital Anomaly Register (the register) was established in 2018. It holds information on babies affected by anomalies from birth year 2000 onwards and is based on linkage and analysis of routine national health records. The register has been an affiliate member of EUROCAT from 2019, and an associate member from 2021. The register is hosted by Public Health Scotland (PHS).

Population Coverage

The Registry covers all mothers delivering within Scotland, irrespective of place of residence. The annual number of births covered by the register is 50-55 000.

Sources of Ascertainment

The Scottish Linked Routine Data Congenital Anomaly Register 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 the Scottish Linked Routine Data Congenital Anomaly Register should be noted by potential data users:

  • the register will under-ascertain anomalies among live born babies that do not necessitate a hospital admission (or lead to death) during the baby’s first year of life
  • as no 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 the register 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

The register 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 national 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 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 <24 weeks (in which case statutory registration is not required).

The register includes spontaneous fetal losses at 20-23 weeks gestation (in additional to spontaneous stillbirths at ≥24 weeks as noted above). These fetal losses are ascertained through maternity hospital discharge records and perinatal mortality enhanced surveillance records.

Exposure Data / Availability

As the Scottish Linked Routine Data Congenital Anomaly Register ascertains cases through linkage and analysis of existing routine records, only minimal variables on ascertained cases are retained within the register 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 the register dataset. However, as PHS holds a wide range of other datasets, linkage of register data to other datasets can be undertaken (given appropriate governance approvals) to enhance the richness of the register data.

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, a combination of Scotland’s master patient index (the CHI database), statutory birth registration records and 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 the Scottish Linked Routine Data Congenital Anomaly Register. PHS maintains the register 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 register data 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

Scottish Linked Routine Data Congenital Anomaly Register,
Public Health Scotland,
Gyle Square,
1 South Gyle Crescent,
Edinburgh EH12 9EB,
Scotland,
United Kingdom

Email:
phs.cardriss@phs.scot

Web:
https://www.isdscotland.org/Health-Topics/Maternity-and-Births/CARDRISS/

https://beta.isdscotland.org/find-publications-and-data/population-health/births-and-maternity/congenital-anomalies-in-scotland/

Updated May 2021