MSDS Consanguinity Data Quality Guidance

NHS England wish to obtain baseline data on the incidence of consanguinity, look for changes in consanguinity over time, and understand how it relates to the incidence of genetic conditions.

Information about whether a pregnancy is consanguineous should be gathered at booking, but can be collected at any time during the antenatal period.

Reporting of data about consanguinity will use SNOMED CT codes recorded within the Maternity Services Dataset (MSDS). Guidance is available to help with the implementation of SNOMED codes.

For any queries about how to record consanguinity in MSDS, please contact [email protected].  

The table below lists definitions of the degree of a consanguineous relationship and the SNOMED code to use.

This is intended to capture data on the number of women within maternity services who are in a consanguineous relationship. We will use SNOMED codes recorded at booking to establish whether a pregnancy is a result of a consanguineous union. More information can be found in the MSDS user guidance and Technical Output Specification.

Providers should use these SNOMED codes to record information about consanguinity for the relationship between the mother and father. Providers should aim to record the degree of the relationship (first, second, third, fourth), however if it is not possible to record a specific degree of consanguinity then the general SNOMED code for consanguinity should be used instead.

For analysis, information captured in the MSD003 Social and Personal Circumstances table will be used. The MSD202 Care Activity (Pregnancy) and MSD109 Finding and Observation (Mother) tables can also be used if necessary, to record information about the relationship between the mother and father as a Finding.

SNOMED code recording in MSDS does also allow a family history of consanguinity for either the mother’s or father’s family to be included in a woman's MSDS record. This is not a priority for current NHS England analysis but if you wish to record this information, this can be done by using SNOMED code 160475008 (Family history: consanguinity) in the MSD108 Family History table.

Other MSDS data items required

The following data items are also required to enable the analysis of all incidences of consanguinity:

MSD001 Mother’s Demographics: NHS Number (Mother), Ethnic Category (Mother)

MSD101 Pregnancy and Booking Details: Pregnancy Identifier, Appointment Date (Formal Antenatal Booking)

Any data submission to MSDS must include valid records from the following tables: MSD000 MSDS Header; MSD001 Mother's Demographics; MSD002 GP Practice Registration; and MSD101 Pregnancy and Booking Details for the submission to be accepted.