BPSU - Reporting instructions

Download monthly reporting instructions for the British Paediatric Surveillance Unit - for each current study, and for previous months.

On this page:

Reporting instructions - October 2017

Conditions under surveillance:

  1. HIV infection and perinatal HIV exposure
  2. Progressive intellectual and neurological deterioration
  3. Congenital rubella
  4. Female Genital Mutilation
  5. Congenital Zika syndrome
  6. Deaths in children with epilepsy (excl. Scotland)
  7. Childhood disintegrative disorder
  8. Life threatening bronchopulmonary dysplasia
  9. Juvenile-onset Systemic Lupus Erythematosus (JSLE)
  10. Listeria infection <90 days
  11. Severe Microcephaly

Important notice: Please inform the BPSU office of retirements or circumstances that will affect your ability to return the orange card. Complete the report card by ticking "nothing to report" or indicating the number of cases of the listed conditions seen in the month specified.

Download October 2017 reporting instructions (PDF, 240KB)

1. HIV infection and perinatal HIV exposure

Case Definition: Any child less than 16 years of age who has HIV infection. Also any child born to a woman known to be HIV infected at the time of that child’s birth regardless of the child's infection status.

Reporting Instructions: Please report any child not previously reported to the BPSU who meets the case definition.

Back to top

2. Progressive intellectual and neurological deterioration

Case Definition: Any child under 16 years of age at onset of symptoms who fulfils all of the following three criteria:
  • Progressive deterioration for more than three months with
  • Loss of already attained intellectual/developmental abilities and
  • Development of abnormal neurological signs.

Excluding: Static intellectual loss e.g. after encephalitis, head injury or near drowning.

Including: Children who meet the case definition even if specific neurological diagnoses have been made.      

  • Metabolic disorders leading to neurological deterioration.
  • Seizure disorders if associated with progressive deterioration.
  • Children that have been diagnosed as having neurodegenerative conditions but not yet developed symptoms

Reporting restricted to: Cases seen in the last month but including those whose conditions began earlier (i.e. including `old cases’ of children in follow-up if seen in that month).

Reporting Instructions: Please report any child seen in the last month who meets the case definition, including those who have already been given a specific diagnosis.

Back to top

3. Congenital rubella

Case Definition:  Any infant (live or still born) or child up to 16 years of age who, in the opinion of the notifying paediatrician, has suspected or confirmed congenital rubella with or without defects, based on history, clinical and/or laboratory findings.  Please include “imported cases”, including children born in the British Isles where the maternal infection occurred abroad, AND children who were born abroad.

Reporting Instructions: Please report any infant (live or still born) or child seen by you for the first time in the last month who meets the case definition, regardless of country of birth

Back to top

4. Female Genital Mutilation <16 years of age

Case Definition: A new presentation of any child aged under 16 (i.e. up to 15 years 11 months), not already known to have FGM who was:

  • Seen because of suspected or known FGM (for example referrals from social care) 


  • Seen for another condition and FGM is suspected following assessment OR
  • Has a genital piercing OR
  • Has had female cosmetic genital surgery including labioplasty.

If uncertain or awaiting further assessment please notify BPSU about the child.

Reporting Instructions: Please report any cases of FGM in children under the age of 16 seen in the past month fitting the surveillance case definition.  Please report even if the case has now been referred to or from your paediatric/nurse colleagues.     

 NOTE: Reporting to the BPSU does not replace statutory reporting to the appropriate bodies.

Back to top

5. Congenital Zika syndrome

Case definition: All infants ≤ 12 months of age with a head circumference > 2 standard deviations below the mean for gestational age and sex (i.e. below the 2nd centile) or any neurological abnormality requiring investigation whose mother has travelled to a country with active Zika transmission during pregnancy or in the three months prior  to  conception.

Exclusion criteria: Travel only to countries without reported Zika transmission (Please check on: http://ecdc.europa.eu/en/healthtopics/zika_virus_infection/zika-outbreak/Pages/Zikacountries-with-transmission.aspx)

Reporting instructions: Please report any cases of infant ≤ 12 months in the past month presenting with congenital Zika syndrome as defined by the case definition.

Back to top

6. Deaths in children with epilepsy (excluding Scotland)

Case definition: Case definition: Any child who dies aged between 1 month and 16 years of age who also has the simultaneous diagnosis of epilepsy. The child must have had seizures or been treated with antiepileptic medication within the last 5 years. 

Reporting instructions: Please report any new cases you have seen in the last month which meet the surveillance definition. Please report all suspected cases, even if the results of investigations are pending. Please report to the BPSU even if you believe the case may have been reported from elsewhere.

Back to top

7. Childhood disintegrative disorder

Case definition: Child must meet criteria A to E:

A. Apparently normal development for at least the first 2 years of life after birth in children up to 10 years of age
B. A definite and persistent loss of previously acquired skills in: expressive or receptive language; play skills; adaptive behaviour and functional skills. 
C. Qualitatively abnormal social functioning, manifest by: qualitative abnormalities in social communication (of the type defined for Autism Spectrum Disorders) and restricted, repetitive and stereotyped patterns of behaviour, interests and activities, including motor stereotypies and mannerisms.
D. The disorder is not attributable to: acquired aphasia with epilepsy; selective mutism; schizophrenia; Rett Syndrome; neurodegenerative diagnosis; acquired brain injury.
E. Absence of new abnormal neurological signs on examination (hence not meeting criteria for the BPSU-PIND study).

Reporting instructions: Please report any child seen in the last month who meets the case definition of childhood disintegrative disorder in the UK or the RoI.

Back to top

8. Life threatening bronchopulmonary dysplasia

Case definition: Any infant initially delivered at <32 completed weeks of gestation, without associated significant (including cardiorespiratory) congenital abnormality, where at (or beyond) 38 weeks postmenstrual age the infant is receiving positive pressure support by any route (ventilation, nCPAP, BIPAP or humidified high flow nasal cannula with a flow more than 2lpm), or receiving pulmonary vasodilators without intercurrent illness to explain this need.

Reporting instructions: Please report any child seen in the last month who meets the case definition in the UK or the RoI.

9. Juvenile-onset Systemic Lupus Erythematosus (JSLE)

Case definition: Any child / young person aged up to 18 years of age who:

1. Has a new, consultant diagnosis of suspected JSLE AND
2. Fulfils 2 or more ACR criteria* AND / OR has lupus nephritis on biopsy AND
3. Has no alternative diagnosis for relevant disease features
* A copy of the ACR criteria can be viewed at http://www.rcpch.ac.uk/bpsu/lupus

Reporting instructions: Please report any child / young person aged up to 18 years of age who meets the case definition in the UK or the RoI.

Back to top

10. Listeria infection in infants <90 days

Case definition: In young infants <90 days a microbiologically confirmed listeria sepsis or meningitis, or  in babies < than 7 days old probable listeria sepsis or meningitis defined as Isolation or PCR confirmation of listeria from maternal cultures (Blood or CSF, placenta or genital tract) and/or isolation of listeria from surface swabs, meconium or nasogastric aspirate from baby and clinical signs of sepsis and treatment of the baby with at least 5 days of appropriate antibiotics, or clinical signs of meningitis and CSF pleocytosis (WCC ≥20 cells / mm3).

Reporting instructions: Please report any infant of 90 days of age or less with a clinical diagnosis of invasive listeria infection according to the treating clinician or with suspected listeria infection treated for at least 5 days with appropriate antibiotics in the UK and ROI.

Back to top

11. Severe Microcephaly

Case definition: Any live born infant up to and including 12 months of age who has a head circumference more than 3 standard deviations below the mean (<-3SD), adjusted for age-, sex- and gestation (using the UK-WHO growth chart standard or UK90 growth chart for babies under 2 weeks of age).

Excluding: infants with anencephaly, and/or similar neural tube defects, (where the standard measurement of occipito-frontal circumference is not appropriate).

Reporting instructions: Please report any live born child aged up to and including 12 months of age who:

  • has been diagnosed with microcephaly in the past month,

and/or noted to have a head circumference that is:

  • more than three standard deviations below the mean (<-3SD) for gestational age and sex, or below the <0.4th percentile for age and sex.

Use your standard growth chart.

If you are unsure whether the child meets the case definition, for example an infant has only had one abnormal head measurement, please report the child or contact the principal investigator.

Excluding:Please do not report babies with anencephaly.

Back to top

Previous month's reporting instructions

Reporting instructions - September 2017

Reporting instructions - August 2017

Reporting instructions - July 2017

Reporting instructions - June 2017

Reporting instructions - May 2017

Reporting instructions - April 2017

Reporting instructions - March 2017

Reporting instructions - February 2017

Reporting instructions - January 2017

Reporting instructions - December 2016

Reporting instructions - November 2016

back to top