Guidance

Newborn blood spot screening: reporting screen positive results from laboratories to CHIS and NBSFS

Published 23 June 2021

Applies to England

The reporting of newborn blood spot (NBS) screen positive results from the laboratory to the Child Health Information Service (CHIS) and Newborn Blood Spot Failsafe Solution (NBSFS) varies across the country. Some laboratories release a positive result to CHIS without confirmation that the clinical team has contacted the family.

Unfortunately, there have been incidents where a health visitor has informed a family of a positive result before the clinical team had contacted the family. The digital Personal Child Health Record (dPCHR) introduces the potential for parents to receive a positive result before having contact with the clinical team. To avoid this possibility, some laboratories already wait for confirmation from the relevant clinical team that parents have been contacted before a positive result is released to CHIS.

This guidance does not change the way families are currently informed of a positive screening result but clarifies when laboratories should report screen positive results to CHIS and NBSFS. It applies to all screen positive results, including cystic fibrosis (CF) carrier status, but does not apply to sickle cell carrier results.

Reporting positive results

Laboratories should notify the relevant clinical team or nominated person of a positive result. The clinical team or nominated person should inform the laboratory when the parent or parents have been contacted. After this has been confirmed, the laboratory should release the positive result to CHIS and NBSFS.

If the clinical team or nominated person does not respond with confirmation, the laboratory must, as a minimum, make 2 further attempts to gain a response over a period of 2 weeks and document these attempts before releasing the positive screening result to CHIS and NBSFS without further delay.

This process helps make sure:

• any questions the family has are answered adequately when the result is communicated, thus reducing their anxiety
• the family is contacted by the clinical team before receiving the result via a letter or electronically (via the dPCHR)
• there is a reduced risk of families receiving positive results from a health visitor before being contacted by the clinical team
• a consistent approach across all newborn screening laboratories when reporting screen positive results

Since 1 June 2021, laboratories must, as a minimum, seek to ensure the family has been contacted before releasing a positive screening result (including CF carriers) to CHIS and NBSFS. This guidance is due to be reviewed in 2023.

This guidance does not close the reporting pathway, as ‘contact’ from the clinical team does not mean that the baby has been seen. However, it does provide a minimum workable standard that is sufficient to release the positive result to CHIS and NBSFS.

The clinical team continues to be responsible for informing the screening laboratory when the newborn baby has been seen in clinic and of the diagnostic outcome. Work continues on how communication can be improved between clinical teams and laboratories.

Informing maternity services, health visitors and GPs

Some laboratories inform maternity services, health visitors and GPs of positive results. To comply with this guidance, laboratories should only inform other appropriate healthcare professionals of positive results after the relevant clinical team has confirmed that it has contacted the family.

Releasing results on a condition by condition basis

All laboratories are permitted to release results on a condition by condition basis. All laboratories must release SCID (severe combined immunodeficiency) results (including 0911-not offered) by 21 days of age to facilitate timely offer and uptake of the BCG vaccination.