BPSU reporting instructions

Download monthly reporting instructions for the British Paediatric Surveillance Unit - for each current study, and for previous months.
Last modified
29 May 2021

Important notices

Please note, the reporting instructions below are for cases seen in May 2021. 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. 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

4. 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

5. 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)

    OR
     
  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

6. 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

7. 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

8. 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

9. Chronic recurrent multifocal osteomyelitis / chronic nonbacterial osteomyelitis (CRMO/CNO)

Case definition: Children and young people up to but not including the age of 16 years with a new diagnosis of possible CRMO/CNO, namely those who have the following features:

  • The presence of localised bone pain, which could be single site or multiple sites

AND

  • The presence of typical radiological findings on plain X-ray (examples include: lysis, sclerosis, cortical thickening or periosteal reaction) or on MRI (examples include: bone marrow oedema on fluid sensitive sequences, or periostitis (periosteal inflammation)

AND

  • The treating clinician has determined that the clinical features are not explained by an alternative diagnosis, eg trauma, infection or neoplasm

Reporting instructions: Please report children/young people up to the age of 16 years with new diagnosis of possible CRMO/CNO in the last month in the UK and Republic of Ireland. 

More about chronic recurrent multifocal osteomyelitis / chronic nonbacterial osteomyelitis (CRMO/CNO) study

10. Outcome of resuscitated term babies with no heart rate detected at 10 minutes of age

Case definition: Any baby who has been cared for in the last month for whom all three of the following conditions were met:

  1. Gestational age 37 or more completed weeks of gestation
  2. Cardiopulmonary resuscitation following delivery
  3. No heart rate detected at 10 minutes of age.

Reporting instructions: Please report any cases of babies meeting the surveillance case definition whom you have seen in the last month in the UK or the Republic of Ireland.

More about outcome of resuscitated term babies with no heart rate detected at 10 minutes of age study

11. Button battery ingestion, inhalation or insertion (excluding Scotland)

Case definition: Any presentation of any child under the age of 16 years who has ingested or aspirated a button battery of any description requiring hospital admission including those that were admitted for only observation (excluding Scotland).

Reporting instructions: Please report any child under 16 years of age who has a suspected or confirmed ingestion or inhalation of a button battery who has gone on to require admission, including those that were admitted for only observation (excluding Scotland).

More about the Button battery ingestion, inhalation or insertion study

12. Avoidant/Restrictive Food Intake Disorder (ARFID)

Case definition: Any child or adolescent aged 5 to 15 years with persistent restriction of quantity and/or range of food intake, associated with one or both of the following:

  1. Nutritional deficiency that requires additional clinical investigation or treatment (e.g. anaemia, micronutrient deficiency, weight loss or poor growth, reliance on nutritional supplementation) that is not fully accounted for by poverty or neglect, cultural practice or an existing medical condition or another mental disorder*
  2. Interference with day-to-day functioning due to eating behaviour (e.g. unable to eat at school or with peers, needs to take preferred foods when out of home, extreme and frequent distress about eating). 

Not explained by ANY of the following:

  1. Lack of available food (e.g. from poverty, famine or neglect)
  2. Culturally sanctioned practice (e.g. endorsed religious and cultural practice)
  3. Other known diagnosis:
    • Allergy to specific food group (e.g. dairy)
    • Gastrointestinal disorder
    • Constipation 
    • Swallowing difficulties
    • Other eating disorder e.g. anorexia nervosa, bulimia nervosa
    • Other medical or psychiatric disorder that fully explains food restriction (not requiring additional clinical attention) e.g. depression, anxiety, OCD, malignancy, diabetes mellitus, inflammatory bowel disease, thyroid disease

*If eating disturbance occurs in the context of another condition/disorder, then in order to meet case definition for ARFID, the severity of eating disturbance should exceed that routinely associated with the particular condition/disorder - and warrant additional clinical attention.

Reporting instructions: Please report any newly diagnosed cases of ARFID seen in the past month in children between the ages of 5 years and before the 15th birthday.                       

More about the Avoidant/Restrictive Food Intake Disorder (ARFID) 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).