BPSU reporting instructions

Download monthly reporting instructions for the British Paediatric Surveillance Unit - for each current study, and for previous months.
Last modified
30 September 2020

Important notices

Please note, the reporting instructions below are for cases seen in September 2020. For reporting instructions from previous months please view the download section at the foot of this web page.

When reporting a case, please keep details of patients for reference.

Please inform the BPSU office of retirements or circumstances that will affect your ability to return the orange e-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.

See BPSU privacy notice

1. Progressive intellectual and neurological deterioration (excluding Republic of Ireland)

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, for example 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 (ie 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.

More about progressive intellectual and neurological deterioration study

2. 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. 

More about congenital rubella study

3. Congenital ichthyosis

Case definition: Any suspected cases of severe congenital ichthyosis in live newborn or still-born babies between 1 November 2018 and 31 October 2020. This includes babies with collodion membrane (a shiny film covering the skin) or harlequin ichthyosis (thick scales encasing the babies’ body).

Reporting instructions: Please report any cases seen within the last month which meet the case definition. You may also report cases seen earlier if you suspect that they have not been reported, provided they were born on or after 1 November 2018.

More about congenital ichthyosis study

4. Sydenham's chorea

Case definition: According to the Jones criteria for Acute Rheumatic Fever, Sydenham’s chorea is defined as “purposeless, involuntary, non-stereotypical movements of the trunk or extremities, often associated with muscle weakness and emotional lability”. Sydenham’s chorea is typically of acute or subacute onset, meaning that chorea reaches a peak within days or weeks rather than months. The Jones criteria include the differential diagnoses which must be excluded in order to confirm a diagnosis of Sydenham’s chorea – these are listed on the notification form. Chorea is frequently a clinical diagnosis. It is important to note that laboratory confirmation of streptococcal infection provides supportive evidence of SC, but absence of such evidence does not preclude clinical confirmation. Cases may be either:

  • Suspected: cases presenting with chorea with acute or subacute onset, but where no diagnosis of SC has yet been made
  • Confirmed clinically: cases where a new diagnosis of SC has been made, with chorea presenting with acute or subacute onset, and lack of clinical or laboratory evidence of an alternative cause as defined by the Jones criteria.

Reporting instructions: Please report children and young people aged 0-16 presenting for the first time to you during the reporting period with a first episode of suspected or confirmed Sydenham’s chorea (i.e. with no prior diagnosis of Sydenham’s chorea) whom you have seen in the last month in the UK or the Republic of Ireland.

More about Sydenham's chorea study

5. Herpes simplex virus in infants less than 90 days of age

Case definition:

  1. Any infant under 90 days of age with a diagnosis of HSV infection based on virus detection by culture, polymerase chain reaction (PCR), immunofluorescene (IF), or serology
  2. Any infant under 90 days of age that has received a completed course of aciclovir for suspected HSV infection, where no other pathogen was found
  3. Any stillborn infant in whom HSV is confirmed

Reporting instructions: Please report any report any cases seen within the last month that meet the case definition in the UK and ROI.

More about herpes simplex virus in infants study

6. Clinical characteristics of children with pneumococcal meningitis

Case definition:

  • Confirmed cases: Children aged <16 years with CSF positive for pneumococcus by culture and/or PCR
  • Probable case: CSF pleocytosis (abnormal increase in number of white blood cells in the CSF) and pneumococcus identified in a sterile site other than the CSF i.e. blood, urine, synovial fluid, pleural space, deep intraoperatively accessed tissue, pus
  • Possible cases: No CSF specimen but abnormal temperature control (>38°C or <36°C), AND pneumococcus identified in sterile site other than CSF (blood, urine, synovial fluid, pleural space, deep intraoperatively accessed tissue or pus) and clinical features indicative of meningitis (any combination of headache, stiff neck, vomiting, photophobia, confusion/delirium, unconscious, coma, seizures, bulging fontanelle, signs of meningism on examination)

Reporting instructions: Please report any child seen in the last month who meets the case definition in the UK or the Republic of Ireland regardless of country of birth.

More about pneumococcal meningitis study

7. Neonatal complications of coronavirus disease (COVID-19) (excluding Republic of Ireland)

Case definition: Any baby or infant:

  1. That has a diagnosis of COVID-19 made on a sample taken before 29 days of age and receives inpatient care for COVID-19 (this includes postnatal ward, neonatal unit, paediatric inpatient wards, PICU)

  2. Where the mother had confirmed COVID-19 at the time of birth or suspected COVID-19 at the time of birth that has subsequently been confirmed, and the baby was admitted for neonatal care (on a neonatal unit).

Reporting instructions: Please report any neonate that meets the case definitions for neonatal complications of Coronavirus disease (COVID-19).

More about neonatal complications of coronavirus disease (COVID-19) study

8. Multi-system inflammatory syndrome, Kawasaki disease and toxic shock syndrome

Case definition: Any child aged <16 years with 1 OR 2 OR 3 regardless of COVID-19 status:

  1. Evidence of hyperinflammation:

      a. Fever >38 oAND 
      b. CRP >100 mg/L AND
      c. With one or more of the following:
                 i.   Cardiac involvement (any one of the following)
                          •   myocarditis/pericarditis/valvulitis OR
                          •   coronary artery involvement (echo) OR 
                          •   cardiac failure/arrest.
                 ii.   Gastrointestinal involvement (any one of the following)
                          •   vomiting/diarrhoea OR
    •   an acute abdomen OR
    •   abnormal liver function(LFTs/clotting).
                 iii.   Respiratory failure (requiring any one of the following)
                          •   high flow and humidified oxygen (HFHO) OR
    •   CPAP OR
    •   ventilation.
                 iv.   Raised Ferritin (>500) +/- Raised D-dimers (>2x upper limit of normal).
      d.   AND no pathogen (except SARS-CoV-2) or diagnosis (e.g. confirmed appendicitis).
  2. Typical or atypical Kawasaki Disease.
  3. Typical or atypical Toxic Shock Syndrome.

Reporting instructions: Please report any child seen in the last month who meets the above case definition in the UK and the Republic of Ireland

More about multi-system inflammatory syndrome, Kawasaki disease & toxic shock syndrome study

9. Glucocorticoid induced adrenal suppression

Case definition: Any patient under 16 years of age whose symptoms or signs* partly or entirely reflect abnormally low adrenal cortisol production arising because of recent or ongoing glucocorticoid administration (adrenal suppression). The inadequate cortisol production may result in symptoms on a regular basis or be manifest acutely in association with a stressful event or illness.

Excluding: Cases of primary adrenal failure arising because of intrinsic adrenal pathology such as autoimmune Addison’s disease or secondary adrenal insufficiency in patients with pituitary hormone deficiency, including those with combined pituitary hormone deficiency and isolated ACTH deficiency who are normally on GC replacement. Also excluded are infants less than 6 months of age who were also born preterm (<37 weeks gestation).

Reporting instructions: Please report any child seen in the last month who meets the case definition seen in the UK or Republic of Ireland. If the diagnosis is awaiting confirmation; the child should still be reported.

More about glucocorticoid induced adrenal suppression study

10. Conservative care in end-stage kidney disease

Case definition: Any incident children aged less than 16 years who develops kidney failure, also known as 'end-stage kidney disease' (ESKD), during the study period for whom an active decision has been made in the child’s best interests not to pursue long-term RRT** and to instead manage the child’s kidney disease conservatively (this decision may have been made before or after reaching ESKD).

Reporting instructions: Please report any cases of children and young people <16 years of age who meets surveillance case definition seen in the last month in the UK or the Republic of Ireland.

Please report cases even if you think they may have been reported elsewhere.

More about conservative care in end-stage kidney disease study

  • *. Signs/symptoms could include hypotension, shock, unexplained hypoglycaemia or hyponatraemia, seizure, lethargy, decreased level or loss of consciousness, anorexia, fatigue, lethargy, myalgia, gastrointestinal symptoms (nausea, vomiting, abdominal pain), growth failure, death (Goldbloom et al. 2017).
  • **. RRT refers to invasive treatments used to substitute the role of the kidneys and includes: Haemodialysis; haemodiafiltration; peritoneal dialysis; renal transplantation; continuous forms of RRT used on Paediatric Intensive Care Units such as continuous venovenous haemodialysis (CVVHD), continuous veno-venous haemodiafiltration (CVVHDF) and slow continuous ultrafiltration (SCUF).