This page provides guidance to clinicians on the process for requesting genetic testing for unexplained death in infancy or sudden unexplained death in childhood. Test code R441.
If a child (under 18 years) has died suddenly and their death remains unexplained after the standard investigation protocols including post mortem, a whole genome sequencing test (R441) can be requested to ascertain whether a genetic cause for death can be established.
Details of the test are included in the national genomic test directory (opens in a new tab).
If you are involved in the care of a family who has lost a child suddenly, you should contact your local Designated Doctor for Child Deaths to seek advice about ordering the R441 test and coordinating child and parental samples.
Who is the Designated Doctor for Child Deaths?
If you don't know who your local Designated Doctor for Child Deaths is, you can request their information via your local Child Death Overview Panel (opens in a new tab).
Alternatively, contact the National Network of Designated Healthcare Professionals (opens in a new tab) for Children: england.safeguarding@nhs.net.
Find out more
We have previously run a training session in collaboration with Sudden Unexplained Death in Childhood UK (opens in a new tab) (SUDC UK) to explain the importance of this testing to families who have lost a child suddenly. The session can be accessed by NHS staff on the FutureNHS platform (opens in a new tab).