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National Surveillance of HIV in Pregnancy and Childhood

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HIV-exposed and HIV-positive children

All infants born to HIV-positive women in the UK or Ireland should be reported to the NSHPC regardless of infection status.

  • All HIV-infected children living in the UK or Ireland (including those who were born abroad) should be reported.
  • Monthly reports are made via the British Paediatric Surveillance Unit (BPSU).
  • No names are requested or recorded, but reports from different sources are matched by date of birth, location of report and other demographic variables. All reports are followed up to confirm the infection status of the reported children.
  • Please note that we are currently piloting online paediatric reporting.

For more information on the paediatric reporting process and how the NSHPC works with the BPSU and CHIPS, please see the Paediatric Reporting Flow Chart and Paediatric Data Sharing Framework.

HIV-exposed children
  • Infants born to HIV-positive women should be notified on the British Paediatric Surveillance Unit's (BPSU) monthly orange reporting card
  • The BPSU forwards all HIV notifications to the NSHPC and we send a blue notification form to the notifying paediatrician for each case reported
  • No identifiers are available for cases at this stage so it is important for notifying paediatricians to record a hospital number or name on the detachable section of the orange card and keep it for future reference
  • A short follow-up form will be sent to collect further test results to confirm infection status for children who remain indeterminate at the latest report
  • We link mothers, children and siblings using demographic details (including dates of birth) and soundex. Visit the soundex page for more information and to use our soundex calculator

Please let us know:

  • If you have a child to notify and are unclear about who is responsible for reporting in your unit
  • If you believe we haven't sent you sufficient forms
  • If you have taken over from a previous respondent in your unit

If you are contacting us regarding a specific case, please remember we do not have patients' names in our database. Helpful identifiers to use are:

  • Our unique mother study number (MSTU) or child study number (CSTU) if allocated
  • Date of birth (mother and/or child) only via telephone and not email.
  • Hospital of birth
  • Soundex
HIV-infected children
  • All HIV-infected children (diagnosed in the UK or Ireland before their 16th birthday) should be notified on the British Paediatric Surveillance Unit's (BPSU) monthly orange reporting card
  • The BPSU forwards all HIV notifications to the NSHPC and we send a blue notification form to the notifying paediatrician for each case reported
  • No identifiers are available for cases at this stage so it is important for notifying paediatricians to record a hospital number or name on the detachable section of the orange card and keep it for future reference
  • Subsequent follow up of children with confirmed infection is carried out through the Collaborative HIV Paediatric Study (CHIPS), a collaboration between the MRC Clinical Trials Unit, the NSHPC and reporting clinicians
  • We link mothers, children and siblings using demographic details (including dates of birth) and soundex. Visit the soundex page for more information and to use our soundex calculator

Please let us know:

  • If you have a child to notify and are unclear about who is responsible for reporting in your unit
  • If you believe we haven't sent you sufficient forms
  • If you have taken over from a previous respondent in your unit

If you are contacting us regarding a specific case, please remember we do not have patients' names in our database. Helpful identifiers to use are:

  • Our unique mother study number (MSTU) or child study number (CSTU) if allocated
  • Date of birth (mother and/or child) only via telephone and not email.
  • Hospital of birth
  • Soundex

For further queries about paediatric reporting, please contact Kate Francis: