Past studies (TEST)

Allergy, immunology and infectious disease

Emergency medicine

Acute flaccid paralysis

Surveillance Period: July 1991 – June 1994
Investigator: Dr N Begg, Glaxosmithkline, Stockley Park West, UXBRIDGE, United Kingdom, UB11 1BT
Advice/Support Group: Contact | info@contact.org.uk

Acute rheumatic fever

Surveillance Period: February 1990 – December 1990
Investigator: Dr C Boyd-Scobie, Dr S Hall c/o Sheffield Children’s Hospital, Stevenson Building, Sheffield S10 2TH
Published paper: Acute Rheumatic Fever. Boyd-Scobie, Hall S. BPSU Fifth Annual Report 1990. BPSU London 1990
Advice/Support Group: Contact | info@contact.org.uk

Adrenal hyperplasia

Surveillance Period: August 2007 – August 2008
Investigator: Dr R Knowles, J Oerton, JM Khalid, Prof C Dezateux, Prof C Kelnar, Prof P Hindmarsh
Published Paper: Late clinical presentation of congenital adrenal hyperplasia in older children: findings from national paediatric surveillance, Arch. Dis. Child. 2014; 99: pp.30-34
Advice/Support Group: Living with CAH

Adverse neonatal outcomes of delivery or labour in water

Surveillance Period: April 1994 – April 1996
Investigator: Dr P Tookey, Dr R Gilbert, Dept of Epidemiology and Public Health, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: Labour and birth in water in England and Wales. Aldernice F, Renfrew M, Marchant S, Ashurst H, et al. BMJ 1995; 310: 837
Published Paper: Perinatal mortality and morbidity among babies delivered in water: surveillance study and postal survey. Gilbert RE and Tookey PA. BMJ 1999; 319: 483-487.
Advice/Support Group: National Childbirth Trust | enquiries@nct.org.uk

Anaphylaxis following immunisation

Surveillance Period: September 2008 – October 2009
Investigator: Dr M Erlewyn-Lajeuness, Paediatric Allergy, Immunology & Infectious Diseases, Southampton University Hospitals NHS Trust, Southampton SO16 6YD
Published Paper: Anaphylaxis as an adverse event following immunisation in the UK and Ireland, M Erlewyn-Lajeuness, LP Hunt, P Heath, A Finn, Arch Dis Child 2012; 97; 487-490
Advice/Support Group: Anaphylaxis Campaign | info@anaphylaxis.org.uk

Androgen insensitivity syndrome

Surveillance Period: Sept 1991 – Aug 1993
Investigator: Professor IA Hughes, University of Cambridge School of Clinical Medicine, Addenbrooke’s Hospital Cambridge CB2 2QQ
Published Paper: Androgen Insensitivity syndrome: a survey of diagnostic procedures and management in the UK. Viner RM, Teoh Y, Williams DM, Patterson MN, Hughes IA. Arch Dis Child. 1997 77 305-309
Advice/Support Group: Androgen Insensitivity Syndrome Support Group

Attention-deficit hyperactivity disorder (ADHD): transition between child and adult services

Surveillance Period: Nov 2015 – Nov 2016
Investigator: Professor T Ford, University of Exeter Medical School, St. Luke’s Campus, Exeter EX1 2LU
Published Paper: Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study. Eke H, Ford T, Newlove-Delgado T, Price A, Young S, Ani C, Sayal K, Lynn RM, Paul M, Janssens A. Br J Psychiatry. 2019 Jun 04:1-7
Published Paper: How to measure the need for transition to adult services among young people with Attention Deficit Hyperactivity Disorder (ADHD): a comparison of surveillance versus case note review methods. Eke H, Janssens A, Downs J, Lynn RM, Ani C, & Ford T. BMC medical research methodology, 19(1), p.179
Advice/Support Group: UK Adult ADHD Network; Adult Attention Deficit Disorder UK

Bacterial meningitis in babies under 90 days of age

Surveillance Period: Jul 2010 – Jul 2011
Investigator: Prof PT Heath, Dr I Okike, St George’s, University of London, Cranmer Terrace, London SW17 0RE
Published Paper: Incidence, aetiology and outcome of bacterial meningitis in infants Aged <90 days in the UK and Republic of Ireland: prospective, enhanced, national population-based surveillance. Okike, IO., Johnson AP., Henderson, KL., Blackburn, RM., Muller-Pebody, B., Ladhani, SN., Anthony, M., Ninis, N., Heath PT. Clin Infect Dis 2014
Advice/Support Group: Meningitis Research Foundation | info@meningitis.org

Behçet’s syndrome

Surveillance Period: May 2015 – May 2017. Follow-up until May 2018.
Investigator: Dr C Pain, Alder Hey Children’s NHS Foundation Trust
Published Paper: Behçet’s syndrome in children and young people in the United Kingdom & Republic of Ireland: a prospective epidemiological study. Pain C, Beresford M, Fortune F,Lai E, Murphy R, Taylor-Robinson D, Brogan P, and Moots R. Rheumatology. 2021.
Advice/Support Group: Behçet’s Syndrome Society | info@behcetsuk.org

Biliary atresia

Surveillance Period: March 1993 – February 1995
Investigator: Dr JP McKiernan, Dr D Kelly, Liver Unit, Birmingham Children’s Hospital, Steelhouse Lane, Birmingham
Published Paper: The frequency and outcome of biliary atresia in the UK and Ireland. McKiernan JP, Baker AJ, Kelly D Lancet 2000; 355: 25 – 29                                                                                                              Published Paper: Seamless management of biliary atresia inEngland and Wales (1999-2002). M Davenport, J De Villede Goyet, M Stringer, G Mieli Vergani, D Kelly, P McClean, L Spitz. Lancet. 2004; 363; 1354-1357.
Advice/Support Group: Children’s Liver Disease Foundation
Advice/Support Group:  https://childliverdisease.org Email: info@childliverdisease.org

British childhood visual impairment and blindness

Surveillance Period: October 2015 – October 2017
Investigator: Professor Jugnoo Rahi, Population, Policy and Practice Programme, UCL Great Ormond Street, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: Visual impairment, severe visual impairment, and blindness in children in Britain (BCVIS2): a national observational study. L Teoh, A Solebo and J Rahi. Published Online First: January 29, 2021. doi:10.1016/S2352-4642(20)30366-7
Advice/Support Group: British Childhood Visual Impairment and Blindness Study Interest Group

Cerebral vascular disease, stroke and like illness

Surveillance Period: February 2001 – February 2002
Investigator: Dr F Kirkham, Southampton University Hospital; Dr A Williams
Published Paper: Cerebral vascular disease 17th BPSU Annual Report 2002
Advice/Support Group: Stroke Association
Web: https://www.stroke.org.uk Email: info@stroke.org.uk

Cerebral oedema and death following diabetic ketoacidosis

Surveillance Period: October 1995 – September 1998
Investigator: Dr J Edge, Dr M Hawkins, Dr D Dunger, Department of Paediatrics, John Radcliffe Hospital, Headington, Oxford OX3 9DU
Published Paper: The risk and outcome of cerebral oedema developing during diabetic ketoacidosis. Edge JA, Hawkins MM, Winter DL, Dunger DB. Arch Dis Child 2001;85:16-22
Advice/Support Group: Diabetes UK | helpline@diabetes.org.uk

Chemistry set poisoning

Surveillance Period: Jan 1991 – April 1992
Investigator: Dr E Mucklow, c/o St Mary’s Hospital, Newport, Isle of Wight PO30 5TG
Published Paper: Chemistry Set Poisoning, Mucklow ES. Internat. Journ. Clin. Pract. 1997; 51.5: 321-23
Advice/Support Group: Child Accident Prevention Trust
Web: https://www.capt.org.uk Email: safe@capt.org.uk

Chylothorax development

Surveillance Period: June 2010 – June 2011
Investigator: Dr P Davis, C Haines, Royal Bristol Hospital for Sick Children, Upper Maudlin Street, Bristol BS2 8BJ
Published Paper: Chylothorax development in infants and children in the UK, C Haines, B Walsh, M. Fletcher, P. Davis, Arch. Dis. Child doi: 10.1136/archdischild-2013-304364

Congenital brachial palsy

Surveillance Period: March 1998 – March 1999
Investigator: Dr G Evans-Jones, Mr S P Kay, Prof M Weindling
Published Paper: Evans-Jones G, Kay S P J, Weindling A M, Cranny G, Ward A, Bradshaw A, Hernon C. Congenital brachial palsy; incidence, causes, and outcome in the United Kingdom and Republic of Ireland, Arch Dis Child. Fetal Neonatal Ed; 88: F185-F189
Advice/Support Group: Contact | info@contact.org.uk

Congenital cataract

Surveillance Period: Oct 1995 – Oct 1996
Investigator: Dr J Rahi, c/o Dept of Epidemiology and Public Health, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: National cross sectional study of detection of congenital and infantile cataract in the United Kingdom: role of childhood screening and surveillance Rahi JS, Dezateux C, BMJ 1999;318:362-365
Published Paper: Capture-recapture analysis of ascertainment by active surveillance in the British Congenital Cataract Study, Rahi JS, Dezateux C, for the British Congenital Cataract Interest Group. Invest. Ophthalmol. Vis. Sci. 1999;40:236-239
Advice/Support Group: Fight for Sight
Web: www.fightforsight.org.uk  Email: info@fightforsight.org.uk

Congenital cytomegalovirus

Surveillance Period: Febraury 2001 – February 2003
Investigator: Dr P Tookey, Professor Marie-Louise Newell. Centre for Paediatric Epidemiology, Institute of Child Health, 30 Guilford Street, London WC1 1EH.
Published Paper: Congenital cytomegalovirus 17th BPSU Annual Report 2002
Advice/Support Group: Congenital CMV Association
Web: http://cmvaction.org.uk Email: info@cmvaction.org.uk 

Congenital dislocation of the hip

Surveillance Period: April 1993 – July 1993
Investigator: Dr C Dezateux, c/o Dept of Epidemiology and Public Health, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: A national survey of screening for congenital dislocation of the hip, Dezateux C, Godward S. Arch. Dis. Child. 1996; 74: 445-448
Published Paper: ‘Screening for congenital dislocation of the hip in the newborn and young infants’, Dezateux C, Godward S. in David, TJ, (ed.) Recent advances in paediatrics. (pp. 41-57). Edinburgh 1997
Advice/Support Group: STEPS
Web: www.steps-charity.org.uk E-mail: info@steps-charity.org.uk

Congenital hypothyroidism

Surveillance Period: June 2011 – June 2012
Investigator: Dr R Knowles, Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: Newborn screening for primary congenital hypothyroidism: estimating test performance at different TSH thresholds, RL Knowles, J Oerton, T Cheetham, G Butler, C Cavanagh, L Tetlow, C Dezateux. The Journal of Clinical Endocrinology & Metabolism.
Advice/Support Group: British Thyroid Foundation E-mail: info@btf-thyroid.org

Congenital syphilis I

Surveillance Period: July 1993 – July 1996
Investigator: Prof. A Nicoll, Dr T Lissauer, *HPA COSC, 61 Colindale Avenue, London NW9 5EQ
Published Paper: Syphilis in pregnant women and their children in the United Kingdom: results from national clinician reporting surveys, Hurtig A-K, Nicoll A, Carne C, Lissauer T et al. BMJ. 1998; 317: 1617-9
Advice/Support Group: Contact | info@contact.org.uk

Congenital syphilis II

Surveillance Period: January 2010 – January 2015
Investigator: Dr I Simms, Public Health England, 61 Colindale Avenue, London NW9 5EQ
Published Paper: The Incidence of congenital syphillis in the United Kingdon: February 2010 to January 2015, Simms ,I., Tookey, PA., Goh, BT., Lyall, H., Evans, B., Townsend, CL., Fifer, H., Ison, C., BJOG 2016
Advice/Support Group: Contact | info@contact.org.uk

Congenital toxoplasmosis I

Surveillance Period: June 1989 – May 1990
Investigator: Dr S Hall c/o Sheffield Children’s Hospital, Stevenson Building, Sheffield S10 2TH
Published Paper: Toxoplasmosis in England and Wales 1981-1992. Ryan M, Hall S M, Barrett N J, Balfour A H, Holliman R E, Joynson D H M. CDR Review 1995. 3, 5(2) pg 21-27.
Published Paper: Screening for Toxoplasmosis during Pregnancy, Peckham CS, Logan S. Arch. Dis. Child. 1993; 68: 3-5
Advice/Support Group: Contact | info@contact.org.uk

Congenital toxoplasmosis II

Surveillance Period: July 2002 – July 2004
Investigator: Dr R Gilbert c/o Centre for Paediatric Epidemiology, Institute of Child Health, 30 Guilford Street, London WC1 1EH, Mr Miles Stanford, Ed Guy
Published Paper: Congenital toxoplasmosis 17th BPSU Annual Report 2002
Advice/Support Group: Contact | info@contact.org.uk

Congenital Zika syndrome

Surveillance Period: April 2016 – April 2018
Investigator: Dr Clarissa Oeser, Emerging Infections and Zoonoses, Public Health England, 61 Colindale Avenue, London NW9 5EQ
Published Paper: Surveillance of congenital Zika syndrome in England and Wales: methods and results of laboratory, obstetric and paediatric surveillance. Oeser C, Aarons E, Heath PT, Johnson K, Khalil A, Knight M, Lynn RM, Morgan D, Pebody R.  Epidemiology & Infection. 2019;147
Advice/Support Group: Microcephaly Support Group

Conversion disorder

Surveillance Period: October 2008 – October 2009
Investigator: Dr C Ani, Academic Unit of Child and Adolescent Psychiatry, Imperial College London, Norfolk Place, London W2 1PG
Published Paper: Incidence and 12-month outcome of non-transient childhood conversion disorder in the UK and Ireland, Ani, C,Reading, R, Lynn RM, Forlee S,  Garralda E, British Journal of Psychiatry (2013) 202, 413-418
Advice/Support Group: Young Minds,
Web: www.youngminds.org.uk Email: ymenquiries@youngminds.org.uk

Deaths in children with epilepsy

Surveillance Period: October 2016 – October 2017
Investigator: Dr Omar Abdel-Mannan, Population, Policy and Practice, Programme, UCL Great Ormond Street Institute of Child Health, 30 Guildford Street, London WC1N 1EH
Published Paper: A national surveillance study of childhood epilepsy mortality in the UK and Ireland. Abdel‐Mannan O, Sutcliffe AG. European Journal of Neurology. 2020 Feb;27(2):327-33.
Advice/Support Group: SUDEP Action | support@sudep.org

Drowning and near drowning

Surveillance Period: February 1988 – December 1989
Investigator: Professor J Sibert, Department of Child Health, Llandough Hospital, Penarth, South Glamorgan CT6 1X
Published Paper: Drowning and near drowning in children in the United Kingdom: lessons for prevention; Kemp A, Sibert JR. Brit. Med. J. 1992; 306: 291-297.
Published Paper: Outcome in Children Who Nearly Drown: a British Isles Study; Kemp AM, Sibert JR Brit. Med. J. 1991; 302: 931-933
Advice/Support Group: Child Accident Prevention Trust
Web: https://www.capt.org.uk Email: safe@capt.org.uk

Early onset eating disorders

Surveillance Period: March 2005 – May 2006
Investigator: Dr DE Nicholls, R Lynn, Dr RM Viner
Published Paper: Childhood Eating Disorders: A national surveillance study. Dr Nicholls DE, Lynn R, Viner RM,The British Journal of Psychiatry (2011) 198, 295–301.
Advice/Support Group: Beat
Web: https://www.beateatingdisorders.org.uk  Email: fyp@beateatingdisorders.org.uk

Encephalitis in early childhood

Surveillance Period: October 1998 – October 2001
Investigator: Dr KN Ward, Consultant Virologist/Honorary Senior Lecturer, Dept of Virology, University College London, Windeyer Building, 46 Cleveland St, London W1P 6DB. Professor EM Ross, Professor of Community Paediatrics, Mary Sheridan Centre, Guy’s, King’s & St Thomas’ School of Medicine, 405 Kennington Road London SE11 4QW.
Published Paper: Encephalitis Human herpes viruses-6 and 7 each cause significant neurological morbidity in Britain and Ireland, Ward KN, Andrews NJ, Verity CM, Miller E, Ross EM. Arch Dis Child. 2005;90;619-62233
Advice/Support Group: Encephalitis Support Group
Web: https://www.encephalitis.info Email: mail@encephalitis.

Enterovirus and parechovirus meningitis

Surveillance Period: July 2014 – July 2015
Investigator: Dr S Kadambari, Paediatric Infectious Diseases Research Group, St George’s University of London, London, UK.
Published Paper:  Enterovirus and parechovirus meningitis in infants younger than 90 days old in the UK and Republic of Ireland: a British Paediatric Surveillance Unit study. Kadambari S, Braccio S, Ribeiro S, Allen DJ, Pebody R, Brown D, Cunney R, Sharland M, Ladhani S. Arch Dis Child. Published Online First: 08 December 2018. doi:10.1136/archdischild-2018-31564.
Advice/Support Group: Meningitis Research Foundation
Web: https://www.meningitis.org

Fatal/severe allergic reactions to food ingestion

Surveillance Period: March 1998 – February 2000
Investigator: Prof A Colver, Dr A Cant, Dr C MacDougall. Donald Court House, 13 Walker Terrace, Gateshead NE8 3EB.
Published Paper: How dangerous is food allergy in childhood? The incidence of severe and fatal allergic reactions across the UK and Ireland Macdougall CF, Cant AJ, Colver AF. Arch. Dis. Child. 2002; 86: 236-239.
Advice/Support Group: Anaphylaxis Campaign
Web: https://www.anaphylaxis.org.uk Email: info@anaphylaxis.org.uk

Female genital mutilation

Surveillance Period: November 2015 – November 2017
Investigator: Dr D Hodes, University College Hospital, 250 Euston Road, London NW1 2PG
Published Paper: Epidemiological surveillance study of female genital mutilation in the UK. Hodes D, O’Donnell NA, Pall K, Leoni M, Lok W, Debelle G, Armitage AJ, Creighton SM, Lynn RM. Arch. Dis. Child. 2020 Oct 6.
Advice/Support Group: Foundation for Women’s Health Research and Development (FORWARD)
Web: https://www.forwarduk.org.uk Email: forward@forwarduk.org.uk

Food protein induced enterocolitis syndrome (FPIES)

Surveillance Period: January 2019 – January 2020
Investigator: Dr G Stiefel, Leicester Royal Infirmary, Infirmary Square, Leicester LE1 5WW, Dr M Erlewyn-Lajeunesse, Southampton General Hospital, Tremona Road, Southampton SO16 6YD
Published Paper: Food protein-induced enterocolitis syndrome in the British Isles. G Stiefel, C Alviani, NA Afzal, A Byrne, G du Toit, A DunnGalvin, J Hourihane, N Jay, LJ Michaelis, M Erlewyn-Lajeunesse. Archives of Disease in Childhood. 2021
Advice/Support Group: Allergy UK, FPIES UK

Galactosaemia

Surveillance Period: Jan 1988 – Sept 1991
Investigator: Mrs A Green, Dr J Holton, Dr M Honeyman*, Professor J Leonard *The Child and Family Centre, 142 Maas Road, Northfield, Birmingham B31 2PR
Published Paper: Galactosaemia, Results of the British Paediatric Surveillance Study 1988-90; Honeyman MM, Green A, Holton JB, Leonard JV Arch. Dis. Child. 1993; 69: 339-341
Advice/Support Group: Galactosaemia Support Group
Web: www.galactosaemia.org Email: sue@galactosaemia.org

Genital herpes

Surveillance Period: April 2007 – April 2008
Investigator: Dr R Reading, Consultant paediatrician, Norfolk and Norwich University Hospital, Colney Lane, Norwich, NR4 7UY
Published Paper: Genital Herpes in Children Under 11 Years and Investigations for Sexual Abuse, Reading R, Hughes G, Hill J, Debelle G, Arch. Dis. Child. 2011; 96 (8); pp.752-7
Advice/Support Group: Contact | info@contact.org.uk

Gonorrhoea, syphillis, chlamydia and trichomonas

Surveillance Period: January 2010 – January 2012
Investigator: Dr R Reading, Consultant paediatrician, Norfolk and Norwich University Hospital, Colney Lane, Norwich, NR4 7UY
Published Paper: Gonnorrhoea, chlamydia, syphillis and trichomonas in children under 13 years of age: national surveillance in the UK and Republic of Ireland, Reading R, Rogstad K, Hughes G, Debelle, G, Arch. Dis. Child doi: 10.1136/archdischild-2013-304996
Advice/Support Group: WellChild
Web: https://www.wellchild.org.uk  E-Mail: info@wellchild.org.uk

Group B streptococcal disease I

Surveillance Period: February 2000 – February 2001
Investigator: Dr P Heath, Dr A Nicoll. Paediatric Infectious Disease Unit and St George’s Vaccine Institute, St George’s Hospital London SW17 ORE
Published Paper: Group B streptococcal disease in UK and Irish infants less than 90 days of age. Heath PT, Balfour G, Weisner AM, Efstratiou A, Lamagni TL, Tighe H, O’Connell LAF, Cafferkey M, Verlander NQ, Nicoll A, AC McCartney. Lancet 2004; 363:292-4.
Advice/Support Group: Group B Strep Support
Web: www.gbss.org.uk

Group B streptococcal disease II

Surveillance Period: April 2014 – April 2015
Investigator: Prof P Heath, Dr C O’Sullivan. Paediatric Infectious Diseases Research Group, St George’s University of London, Cranmer Terrace, London SW17 ORE
Published Paper: Group B streptococcal disease in UK and Irish infants younger than 90 days, 2014–15: a prospective surveillance study. O’Sullivan CP, Lamagni T, Patel D, Efstratiou A, Cunney R, Meehan M, Ladhani S, Reynolds AJ, Campbell R, Doherty L, Boyle M. The Lancet Infectious Diseases. 2019 Jan 1;19(1):83-90.
Advice/Support Group: Group B Strep Support
Web: www.gbss.org.uk Email: info@gbss.org.uk

Guillain-Barre syndrome/Fisher syndrome

Surveillance Period: September 2009 – August 2010
Investigator: Dr C Verity, Consultant Paediatric Neurologist, Department of Paediatrics, Addenbrooke’s Hospital, Hills Road, Cambridge CB2 0QQ
Published Paper: Guillain-Barre syndrome and H1N1 influenza vaccine in UK children, Verity C, Stellitano L, Winstone AM, Andrews N, Stowe J, Miller E; The Lancet Vol 378, 29 Oct 2011, pp.1545-1546
Published Paper: Pandemic A/H1N1 2009 influenza vaccination, preceding infections and clinical findings in UK children with Guillain-Barre syndrome, Verity C, Stellitano L, Winstone AM, Andrews N, Stowe J, Miller E; Arch. Dis. Child, published online 28 February 2014.
Advice/Support Group: Guillain-Barre Support Group
Web: http://www.gaincharity.org.uk E-Mail: office@gaincharity.org.uk 

Haemorrhagic shock encephalopathy syndrome

Surveillance Period: June 1986 – December 1988
Investigator: Dr S Hall, c/o Sheffield Children’s Hospital, Stevenson Building, Sheffield S10 2TH
Published Paper: Haemorrhagic Shock Encephalopathy Syndrome in the British Isles Bacon CJ, Hall SM. Arch. Dis. Child. 1992; 67: 985-993
Advice/Support Group: Contact | info@contact.org.uk

Haemolytic uraemic syndrome I

Surveillance Period: June 1986 – December 1989
Investigator: Dr M Taylor, Birmingham Children’s Hospital, Steelhouse Lane, Birmingham
Published Paper: Haemolytic Uraemic Syndrome in the British Isles 1985-88; Association with Verocytotoxin-Producing E coli; Milford DV, Taylor CM, Guttridge B, Hall SM, Rowe B, Kleanthous H. Arch. Dis. Child. 1990; 65: 716-72
Advice/Support Group: Haemolytic Uraemic Syndrome Support (HUSH)
Web: http://www.ecoli-uk.com

Haemolytic uraemic syndrome II

Surveillance Period: February 1997 – February 2001
Investigator: Dr M Taylor, Birmingham Childrens Hospital, Steelhouse Lane, Birmingham, Richard Lynn, Dr G K Adak, Professor Sarah O’Brien, Ms Mary Locking
Published Paper: Childhood Haemolytic Urameinc Syndrome, United Kingdom and Ireland, Lynn RM, O’Brien SJ, Taylor CM, Adak GK, Chart H, Cheastry T, Cola JE, Gillespie IA, Locking ME, Reilly WJ; Emerg Infect Dis. 2005: 11(4):590-6
Advice/Support Group: Haemolytic Uraemic Syndrome Support (HUSH)
Web: http://www.ecoli-uk.com

Haemolytic uraemic syndrome III

Surveillance Period: October 2011 – October 2014
Investigator: Dr Bob Adak, Public Health England, 61 Colindale Avenue, London NW9 5EQ
Published Paper: Sociodemographic and clinical risk factors for paediatric typical haemolytic uraemic syndrome: retrospective cohort study, Adams N, Byrne L, Rose T, Adak B, Jenkins C, Charlett A, Violato M, O’Brien S, Whitehead M, Barr B, Taylor-Robinson D, Hawker J. BMJ Paediatr Open. 2019 Dec 17;3(1).

Haemophagocytic lymphohistiocytosis

Surveillance Period: September 1991 – August 1994
Investigator: Professor S Strobel*, Dr M Taylor, Dr J Pritchard, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: 10th BPSU Annual Report, London 1995
Advice/Support Group: The Histiocytosis Research Trust
Web: http://www.hlhsupport.org Email: info@hlhsupport.org

Haemophilus influenza B vaccination failure

Surveillance Period: September 1992 – August 1998
Investigator: Dr P Heath, St Georges Hospital

Hepatitis C virus (HCV) infection

Surveillance Period: March 1997 – March 1999
Investigator: Dr D Gibb, Ms P Neave, Ms P Tookey Department of Epidemiology and Public Health, Institute of Child Health, 30 Guilford St, London WC1N 1EH.
Published Paper: Active surveillance of hepatitis C infection in the UK and Ireland. Gibb DM, Neave PE, Tookey PA, Ramsay M, Harris H, Balogun K, Goldberg D, Mieli-Vergani G, Kelly D Arch Dis Child. 2000 Apr;82(4):286-91
Advice/Support Group: Children’s Liver Disease Foundation
Web: childliverdisease.org Email: info@childliverdisease.org

Higher order births

Surveillance Period: February 1989 – December 1989
Investigator: Prof M Levene, Leeds General Infirmary, Belmont Grove, Leeds LS2 9NS
Published Paper: Higher multiple births and the modern management of infertility in Britain. For the British Association of Perinatal Medicine; Levene MI, Wild J, Steer P.Brit. Journ. Obst. and Gyn. 1992; 99: 607-613
Advice/Support Group: Multiple Births Foundation
Web: http://www.multiplebirths.org.uk Email: mbf@imperial.nhs.uk

HIV infection and vertical HIV exposure

Surveillance Period: June 1986 – June 2019
Investigator: Dr C Thorne, Reader in Infectious Disease Epidemiology, Population, Policy & Practice Programme, UCL GOS Institute of Child Health, 30 Guilford Street, London WC1N 1EH.
Published Paper: A full list of publications and presentations can be found at https://www.ucl.ac.uk/nshpc/publications-and-presentations
Advice/Support Group: Children’s HIV Association (CHIVA)
Web: https://www.chiva.org.uk  Email: message@chiva.org.uk

Hypocalcaemic seizures secondary to vitamin D deficiency

Surveillance Period: September 2011 – September 2013
Investigator: Dr E Basatemur, NIHR Academic Clinical Fellow, General & Adolescent Paediatric Unit, UCL GOS Institute of Child Health, 30 Guilford St, London WC1N 1EH.
Published Paper: Incidence of hypocalcaemic seizures due to vitamin d deficiency in children in the United Kingdom & Ireland. Basatemur E, Sutcliffe A, J Clin Endocrinol Metab. 2014 Oct 3:jc20142773
Advice/Support Group: Contact | info@contact.org.uk

Inflammatory bowel disease

Surveillance Period: June 1998 – June 1999
Investigator: Prof B Sandhu, Dr A Sawcenko. Royal Hospital for Sick Children, St Michaels Hill, Bristol BS2 8BJ
Published Paper: Prospective survey of childhood inflammatory bowel disease in the British Isles, Sawczenko A, Sandhu BK, Logan RFA, Jenkins H, Taylor CJ, Mian S, Lynn R; The Lancet 2001; 357: 1093-94
Advice/Support Group: Crohn’s and Colitis UK
Web: https://www.crohnsandcolitis.org.uk

Insulin dependent diabetes

Surveillance Period: Jan 1992 – Dec 1992
Investigator: Professor JD Baum, Dr E Wadsworth, Institute of Child Health, Royal Hospital for Sick Children, St Michael’s Hill, Bristol BS2 8BJ
Published Paper: Insulin dependent diabetes in children under 5: incidence and ascertainment validation for 1992, Wadsworth E, Shield J, Hunt L; BMJ 1995; 67:700-703
Published Paper: Aetiopathology and genetic basis of neonatal diabetes; Shield JP, Gardner RJ, Wadsworth EJ, Whiteford ML, James RS, Robinson DO, Baum JD, Temple IK; Arch. Dis. Child. 1997; 76: F39-F42
Published Paper: Dermatoglyphics, fetal growth and insulin dependent diabetes in children under 5 years; Shield JP, Wadsworth EJ, Hobbs K, Baum JD; Arch. Dis. Child. 1995 Feb;72(2):159-60
Published Paper: A case-control study of environmental factors associated with diabetes in the under 5 years; Wadsworth EJ, Shield JP, Hunt LP, Baum JD; Diabetic Medicine 1997; 14(5): 390-6
Advice/Support Group: Diabetes UK | helpline@diabetes.org.uk

Internal abdominal injury due to child abuse

Surveillance Period: March 2002 – March 2003
Investigator: Dr P Barnes, Dr C A Norman, Dr AM Kemp, Professor J Sibert
Published Paper: Internal abdominal injury due to child abuse; Barnes PM, Norton CM,  Dunstan FD, Kemp A, Yates D, Sibert J; The Lancet 2005; 366:234-235
Advice/Support Group: Contact | info@contact.org.uk

Intussusception

Surveillance Period: March 2008 – March 2009
Investigator: Prof B Taylor, D JC Cameron, S Marven, Dr H El Bashir
Published Paper: Intussusception incidence among infants in the UK and Republic of Ireland: A pre-rotvirus vaccine prospective surveillance study; Samad L, Cortina-Borja M, El Bashir H, Sutcliffe AG, Marven S, Cameron JC, Lynn R, Taylor B; Vaccine 2013 Aug 28; 31 (38): 4098-102
Advice/Support Group: Contact | info@contact.org.uk

Invasive fungal infection in VLBW infants

Surveillance Period: February 2003 – February 2004
Investigator: Dr W McGuire
Published Paper:  Invasive fungal infection in VLBW infants; Clerihew L, Lamagni TL, Brocklehurst P, McGuire W; Arch Dis Child Fetal Neonatal Ed. 2006 May;91(3):F188-92
Advice/Support Group: Contact | info@contact.org.uk

Invasive haemophilus influenzae infection

Surveillance Period: September 1992 – October 2000
Investigator: Dr P Heath*, Dr M Slack. *St Georges’ Hospital Medical School and Vaccine Institute, London SW17
Published Paper: R Booy, PT Heath, MPE Slack, N Begg, ER Moxon; Vaccine failures after primary immunisation with Haemophilus influenza type-b comjugate vaccine without booster; Booy R, Heath PT, Slack MPE, Begg N, Moxon ER; Lancet 1997; 349: 1197-202
Advice/Support Group: Contact | info@contact.org.uk

Juvenile dermatomyositis

Surveillance Period: June 1992 – Dec 1993
Investigator: Dr D Symmons, Dr A Sills, ARC Epidemiology Research Unit, Stopford Building, University of Manchester, Oxford Road, Manchester, M13 9PT
Published Paper: The incidence of juvenile dermatomyositis: results from a nationwide study; DP Symmons, JA Sills, SM Davis; Brit. Journ. Rheum. 1995; 34: 732-736
Advice/Support Group: Myositis Support Group
Web: www.myositis.org.uk E-mail: msg@myositis.org.uk

Kawasaki disease I

Surveillance Period: June 1986 – December 1992
Investigator: Dr S Hall c/o Sheffield Children’s Hospital, Stevenson Building, Sheffield S10 2TH
Published Paper: Management of Kawasaki Disease in the British Isles; Dhillon R, Newton L, Rudd PT, Hall SM; Arch. Dis. Child.1993. 69: 631-638
Published Paper: Kawasaki Syndrome: Lessons for Britain; Bissenden JG, Hall SM; Brit. Med. J. 1990; 300: 1025-1026
Advice/Support Group: Kawasaki Disease Foundation
Web: http://www.kdfoundation.org Email: info@kdfoundation.org

Kawasaki disease II

Surveillance Period: February 2015 – February 2016
Investigator: Prof R Tulloh, University Hospitals of Bristol NHS Foundation Trust, Upper Maudlin Street, Bristol BS2 8BJ
Published Paper: ‘Kawasaki disease: a prospective population survey in the UK and Ireland from 2013 to 2015‘; RMR Tulloh, R Mayon-White, A Harnden, et al.; Arch Dis Child 2018;0:1–7. doi:10.1136/archdischild-2018-315087
Advice/Support Group: Societi – The UK Kawasaki Disease Foundation
Web: https://www.societi.org.uk

Langerhans cell histiocytosis

Surveillance Period: June 2003 – June 2005
Investigator: Prof L Parker, Paediatric Epidemiologist, Newcastle University, Sir James Spence Institute, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP UK
Published Paper: Incidence and clinical features of Langerhans cell histiocytosis in the UK and Ireland; Salotti JA, Nanduri V, Pearce MS, Parker L, Lynn R, Windebank KP;  Arch Dis Child. 2009 May;94(5):376-80.Epub2008 Dec 5.
Advice/Support Group: Histio UK
Web: http://www.histiouk.org Email: info@hrtrust.org

Life threatening bronchopulmonary dysplasia

Surveillance Period: July 2017 – July 2018 (13 months of surveillance). Follow-up until July 2019 (12 month follow-up).
Investigator: Dr S Harigopal, Dr J Berrington, Dr S Ramaiah, Neonatal Unit, Royal Victoria Infirmary, Newcastle NE1 4LP
Published Paper: Life-threatening bronchopulmonary dysplasia: a British Paediatric Surveillance Unit Study. R Naples, S Ramaiah, J Rankin, J Berrington, S Harigopal.  Arch Dis Child Fetal Neonatal Ed. 2021.
Advice/Support Group: Bliss
Web: www.bliss.org.uk  Email: ask@bliss.org.uk

Listeria infection in infants

Surveillance Period: September 2017 – September 2019
Investigator: Dr Stefania Vergnano, Bristol Royal Hospital For Children, Bristol. Professor Paul T Heath, St Georges University of London, London.
Published Paper: S Vergnano, G Godbole, A Simbo, A Smith-Palmer, M Cormican, A Mark and P Heath. ‘Listeria infection in young infants: results from a national surveillance study in the UK and Ireland‘. Archives Of Disease In Childhood.2021.
Advice/Support Group: Bliss
Web: www.bliss.org.uk  Email: ask@bliss.org.uk

Long-term parenteral nutrition

Surveillance Period: Feb 1992 – April 1992
Investigator: Prof D Candy, Professor E Ross, Dr S Devane, Department of Child Health and Community Paediatrics, King’s College School of Medicine and Dentistry, London SE5 8RX
Published paper: Survey of children on long term parenteral nutrition, UK and Eire 1992. BPSU 8th Annual Report 1993
Advice/Support Group: Contact | info@contact.org.uk

Lowe syndrome

Surveillance Period: June 1986 – February 1988
Investigator: Dr C McKeown, Department of Medical Genetics, St Mary’s Hospital, Manchester 13 OJH
Published Paper: Lowe Syndrome.  BPSU 2nd Annual Report; McKeown C;  BPSU London 1997.
Advice/Support Group: Lowe Syndrome Association
Web: lowesyndrome.org E-mail: info@lowesyndrome.org

Malaria

Surveillance Period: January 2006 – February 2007
Investigator: Dr S Ladhani, Immunisation, Hepatitis and Blood Safety Department, Public Health Enlgand, 61 Colindale Avenue, London NW9 5EQ
Published Paper: Prospective, National Clinical and Epidemiologic Study on Imported Childhood Malaria in the United Kingdom and the Republic of Ireland; Ladhani S, Garbash M, Whitty CJ, Chiodini PL, Aibara RJ, Riordan FA, Shingadia D; Paediatric Infectious Disease Journal, 29 (5); pp.434-438
Advice/Support Group: Malaria No More
Web: https://www.malarianomore.org.uk Email: info@malarianomore.org.uk

Measles, mumps, rubella-meningoencephalitis

Surveillance Period: Jan 1990 – Dec 1991
Investigator: Dr N Begg, c/o PHLS CDSC, 61 Colindale Avenue, London NW9 5EQ
Published Paper: Meningoencephalitis associated with MMR vaccine; Maguire HC,  Begg NT, Handford SC; Communicable Disease Report 1991; 1 (6): R57-R59
Advice/Support Group: Meningitis Now
Web: https://www.meningitisnow.org Email: info@meningitisnow.org

Medium chain acyl-CoA dehydrogenase

Surveillance Period: March 1994 – March 1996
Investigator: Dr R J Pollitt, Prof J Leonad, Neonatal Screening Laboratory, Sheffield Children’s Hospital, Sheffield S10 2TH
Published Paper: Prospective surveillance study of medium-chain acyl-CoA dehydrogenase deficiency in the UK; Pollitt RJ, Leonard JV; Arch. Dis. Child. 1998; 79: 116-119
Neonatal screening for inborn errors of metabolism: cost, yield and outcome; Pollitt RJ, Green A, McCabe CJ et al.; Health Technol Assess Report 1997
Advice/Support Group: Climb, Climb National Information and Advice Centre for Metabolic Diseases
Web: www.climb.org.uk E-mail: info@climb.org.uk.

Methicillin resistant staphylococcus aureus (MRSA) bacteraemia

Surveillance Period: June 2005 – June 2007
Investigator: Dr AP Johnson, Department of Healthcare-Associated Infections & Antimicrobial Resistance, HPA for Infections, London NW9 5EQ
Published Paper: Enhanced surveillance of methicillin-resistant Staphylococcus aureus (MRSA) bacteraemia in children in the UK and Ireland; AP Johnson, M Sharland et al.; Arch Dis Child. 2011 Jun;96(6):e1.
Advice/Support Group: Contact | info@contact.org.uk

Neonatal herpes I

Surveillance Period: June 1986 – Dec 1991
Investigator: Dr PA Tookey, Professor C S Peckham, Dr R Dinwiddie Unit of Epidemiology and Public Health, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: Neonatal herpes simplex virus infection in the British Isles; Tookey P, Peckham CS; Paediatric and Perinatal Epidemiology 1997; 10: 432-442
Advice/Support Group: Herpes Viruses Association
Web: http://www.herpes.org.uk E-Mail: info@herpes.org.uk

Neonatal herpes II

Surveillance Period: January 2004 – February 2007
Investigator: Dr P Tookey, Centre for Paediatric Epidemiology and Biostatistics, Institute of Child Health, 30 Guildford Street, London WC1N 1EH
Advice/Support Group: Herpes Viruses Association
Web: http://www.herpes.org.uk Email: info@herpes.org.uk

Neonatal necrotising enterocolitis

Surveillance Period: October 1993 – October 1994
Investigator: Professor A Lucas, Ms R Abbott, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: Neonatal necrotising enterocolitis; Lynn R, Nicoll A, Guy M; BPSU 11th Annual Report 1996/7. London 1998
Advice/Support Group: Contact | info@contact.org.uk

Non-accidental poisoning / Munchausen syndrome by proxy

Surveillance Period: September 1992 – August 1994
Investigator: Dr P Davis, Professor J Sibert, Professor SR Meadow, Dr R McClure
Published Paper: The epidemiology of Munchausen Syndrome by Proxy, Non-accidental poisoning and Non-accidental suffocation; McClure RJ, Davis PM, Meadow SR, Sibert JR; Arch. Dis. Child. 1996; 75: 57-61
Advice/Support Group: Contact
Web: https://contact.org.uk  Email: info@contact.org.uk

Non-type 1 diabetes

Surveillance Period: October 2004 – October 2005
Investigator: Ms L Haines, Dr K Chong Wan, R Lynn, T Bartlett, Dr J Shields
Published Paper: Rising incidence of type 2 diabetes in children in the United Kingdom; Haines L, Wan KC, Lynn R, Barrett TG, Shield JP;Diabetes Care. 2007; 30(5):1097-1101
Advice/Support Group: Diabetes UK | helpline@diabetes.org.uk

Neonatal meningitis

Surveillance Period: July 1996 – Dec 1997
Investigator: Dr D Holt, Mrs S Halkett, Karim Centre for Meningitis Research, Queen Charlotte’s and Chelsea Hospital, London W6 0XG
Published Paper: Neonatal meningitis in England and Wales: 10 years on; Holt DE, Halket S, de Louvois J, Harvey D; Arch Dis Child Fetal Neonatal Ed 2001;84:F85-F89 F85 Advice/Support Group: Meningitis Now
Web: https://www.meningitisnow.org Email: info@meningitisnow.org

Nutritional rickets

Surveillance Period: March 2015 – March 2017
Investigator: Professor M Blair, Northwick Park Hospital, Watford Road, Harrow HA1 3UJ
Dr P Julies, Royal Free Hospital, Pond Street, London NW3 2QG
Published Paper: Nutritional rickets under 16 years: UK surveillance results, Julies P, Lynn RM, Pall K, Leoni M, Calder A, Mughal Z, Shaw N, McDonnell C, McDevitt H, and Blair M, Arch Dis Child 105(6), pp.587-592.
Advice/Support Group: Contact
Web: https://contact.org.uk/ Email: info@contact.org.uk

Patent Ductus Arteriosus (PDA)

Surveillance Period: Sept 2012 – Sept 2013
Investigator: Dr L Lee, Queen’s Medical Centre,Nottingham University Hospitals, Derby Road, Nottingham NG7 2UH.
Published Paper: Surgical management of patent ductus arteriosus in pre-term infants – a british paediatric surveillance study. A Warnock, L Szatkowski, A Lakshmanan, L Lee & W Kelsall. BMC Pediatrics. 2021.

Pyroxidine dependent seizures

Surveillance Period: Sept 1995 – Oct 1996
Investigator: Dr P Baxter, Reyegate Children’s Centre, Sheffield Children’s Hospital, Sheffield S10 2TH
Published Paper: Epidemiology of pyridoxine dependent and pyridoxine responsive seizures in the UK; Baxter P; Arch Dis Chil. 1999; 81(5); 431-3.
Advice/Support Group: Climb | info@climb.org.uk

Raised blood lead levels

Surveillance Period: Jun 2010 – Jun 2012
Investigator: Dr. Ruth Ruggles, Public Health England, 61 Colindale Avenue, London NW9 5EQ
Published Paper: Surveillance of Elevated Blood Lead in Children (SLiC), PHE publications gateway number 2018484, PDF, 520KB, 65 pages
Advice/Support Group: Contact | info@contact.org.uk

Rett syndrome

Surveillance Period: April 1990 – June 1990
Investigator: Dr A Kerr, Quarrier’s Homes, Bridge of Weir, Renfrewshire, PA1 3SA
Published Paper: Rett Syndrome: British Longitudinal Study (1982-1990) and 1990 Survey. JJ Roosendaal (ed.); in Mental Retardation and Medical Care. Uitgeverij Kerckebosch, Zeist 1991
BPSU Survey of Rett Syndrome.BPSU 5th Annual report 1990. London 1990.
Advice/Support Group: Rett UK
Web: www.rettuk.org Email: info@rettsyndrome.org.uk

Reye’s syndrome

Surveillance Period: June 1986 – March 2001
Investigator: Dr S Hall, Mr R Lynn. C/o British Paediatric Surveillance Unit, 50 Hallam Street, London W1W 6DE
Published Paper: The changing clinical pattern of Reye’s syndrome 1982-1990; RM Hardie RM, Newton LH, Bruce JC, Glasgow JF, Mowat AP, Stephenson JB, Hall SM; Arch Dis Child. 1996 May;74(5):400-5
Reye’s Syndrome 1986-2001 15th BPSU Annual Report 2000
Advice/Support Group: National Reye’s Syndrome Foundation UK
Web: http://www.reyessyndrome.co.uk

Scleroderma

Surveillance Period: July 2005 – July 2007
Investigator: Dr A Herrick
Published Paper: Incidence of childhood linear scleroderma and systemic sclerosis in the UK and Ireland; Herrick A, Ennis H,Bhushan TM, Silman A, Baildam E; Arthritis Care & Research 2010; 62 (2): 213–218
Advice/Support Group: Scleroderma and Raynauds UK
Web: https://www.sruk.co.uk Email; info@sruk.co.uk

Severe complications of varicella

Surveillance Period: November 2002 – November 2003
Investigator: Dr C Bramley
Published Paper: Severe complications of varicella 17th BPSU Annual Report 2002
Published Paper: Severe complications of chickenpox in hospitalised children in the UK and Ireland; Cameron JC, Allan G, Johnston F, Finn A, Heath PT, Booy R; Arch Dis Child. Dec;92(12):1062-6.
Advice/Support Group: Contact | info@contact.org.uk

Severe hyperbilirubinaemia

Surveillance Period: June 2003 – June 2005
Investigator: Dr Donal Manning, Department of Paediatrics, Wirral Hospital, Arrowe Park, Wirral CH49 5PE
Published Paper: Prospective surveillance study of severe hyperbilirubinaemia in the newborn in the UK and Ireland; Manning D, Todd P, Maxwell M, Platt MJ; Arch Dis Child Fetal Neonatal Ed 2007; 92 (3); pp.342-46
Advice/Support Group: Children’s Liver Disease Foundation
Web: childliverdisease.org Email: info@childliverdisease.org

Severe neonatal hypernatraemia

Surveillance Period: May 2009 – May 2010
Investigator: Dr Sam Oddie, Bradford Royal Infirmary, Duckworth Lane, Bradford BD9 6RJ
Published Paper: Severe neonatal hypernatraemia: a population based study; Oddie SJ, Craven V, Deakin K, Westman J, Scally A; Arch Dis Child Fetal Neonatal Ed. 2013 Sep;98(5):F384-7
Advice/Support Group: Contact | info@contact.org.uk

Severe visual impairment and blindness

Surveillance Period: October 1999 – December 2000
Investigator: Dr J Rahi, Ms C Gilbert, Miss I R Eggett, Mr D Taylor, Professor C Peckham, Ms K Rantell. Dept of Epidemiology and Biostatisitics, Institute of Child Health, 30 Guilford Street, London WC1N 1EH
Published Paper: Severe visual impairment and blindness in children in the UK; Rahi J, Noriko C,on behalf of the British Childhood Visual Impairment Study Group (BCVISG.);  Lancet 2003; 362: 1359-1365
Advice/Support Group: Fight for Sight
Web: www.fightforsight.org.uk  Email: info@fightforsight.org.uk

Subacute sclerosing panencephalitis

Surveillance Period: June 1986 – June 2001
Investigator: Dr E Miller, PHLS, 61 Colindale Avenue, London NW9 5EQ
Published Paper: The epidemiology of Subacute Sclerosing Panencephalitis in England and Wales 1970-1989; Miller C, Farrington CP, Harbart K; Int. J. Ep. 1992; 21:(5):998-1006.
Published Paper: Development of a dual target PCR for detection and characterization of measles virus in clinical specimens; Jin L, Richards A, Brown DWG; Molec and Cell Probes 1996;10:191-200
Published Paper: The epidemiology of subacute sclerosisng panencephalitis in England and Wales 1990-2002; Miller C, Andrews N, Rush M, Munro H, Jin L, Miller E; Arch Dis Child. 2004;89(12):1145-8
Advice/Support Group: Encephalitis Society
Web: https://www.encephalitis.info Email: mail@encephalitis.info

Subdural haematoma/effusion

Surveillance Period: April 1998 – April 1999
Investigator: Dr C Hobbs, Dr J Wynne, Community Paediatrics, St James’ University Hospital, Leeds LS9 7TF
Published Paper: Subdural heamatoma and effusion in infancy: epidemiological study; Hobbs C, Childs AM, Wynne J, Livingston J, Seal A; Arch. Dis. Child.2005;90;952-955
Advice/Support Group: Children’s Brain Injury Trust
Web: www.childbraininjurytrust.org.uk Email: info@cbituk.org

Sudden unexpected early postnatal collapse

Surveillance Period: November 2008 – November 2009
Investigator: Dr JC Becher, Dr A Lyon, DS Bhushan, Royal Infirmary of Edinburgh
Published Paper: Unexpected collapse in apparently healthy newborns – a prospective study of a missing cohort of neonatal deaths and near-death events; Becher JC, Lyon A, Bhushan DS; Arch. Dis. Child Fetal Neonatal Ed. 2012 Jan; 97 (1): F30-4
Advice/Support Group: Contact | info@contact.org.uk

Suspected fatal adverse drug reactions

Surveillance Period: June 2002 – June 2003
Investigator: Dr K Cheng, Professor T Stepehenson
Published Paper:  Identification of suspected fatal adverse drug reactions by paediatricians: a UK surveillance study; Cheng K et al.;Arch. Dis. Child. 2008 Jul;93(7):609-11
Advice/Support Group: Contact | info@contact.org.uk

Thrombosis in childhood

Surveillance Period: February 2001 – February 2003
Investigator: Dr B Gibson, Dr P Bolton-Maggs
Published Paper: Thrombosis in childhood 16th BPSU Annual Report 2001
Advice/Support Group: Contact | info@contact.org.uk

Thyrotoxicosis

Surveillance Period: September 2004 – September 2005
Investigator: Dr S Williamson
Published Paper: 19th BPSU Annual Report. 2005
Advice/Support Group: British Thyroid Foundation
Web: http://www.btf-thyroid.org Email: info@btf-thyroid.org

Toxic shock syndrome

Surveillance Period: October 2008 – October 2009
Investigators: Dr S Adalat & Dr T Dawson, Paediatric Nephrology Department, Evelina Children’s Hospital, Westminster Bridge Road, London, SE1 7EH.
Published Paper: Toxic shock syndrome surveillance in UK children; Adalat S, Dawson T, Hackett SJ, Clark JE; Arch. Dis. Child doi: 10.1136/archdischild-2013-304741
Advice/Support Group: Contact | info@contact.org.uk

Transient and permanent neonatal diabetes

Surveillance Period: July 1994 – August 1995
Investigator: Dr J Shield, Professor JD Baum, Institute of Child Health, Royal Hospital for Sick Children, Bristol, St Michael’s Hill, Bristol, BS2
Published Paper: Aetiopathology and genetic basis of neonatal diabetes; Shield JP,  Gardner RJ, Wadsworth EJ, Whiteford ML, James RS, Robinson DO, Baum JD, Temple IK; Arch. Dis. Child. 1997; 76: F39-F42
Advice/Support Group: Diabetes UK | helpline@diabetes.org.uk

Tuberculosis

Surveillance Period: December 2003 – February 2005
Investigators: Dr D Shingadia, Dr S Teo
Published Paper: Tuburculosis in the United Kingdom and Republic of Ireland; Teo SS, Riordan A, Alfaham M, Clark J, Evans MR, Sharland M, Novelli V, Watson JM, Sonnenberg P, Hayward A, Moore-Gillon J, Shingadia D; Arch Dis Child. 2009 Apr;94(4):263-7
Advice/Support Group: Contact | info@contact.org.uk

Type 2 diabetes

Surveillance Period: April 2015 – April 2016
Investigators: Prof J Hamilton-Shield, Dr TP Candler
Published Paper: Continuing rise of Type 2 diabetes incidence in children and young people in the UK; Candler TP, Mahmoud O, Lynn RM, Majbar AA, Barrett TG, Shield JPH. Diabet Med. 2018 Jun;35(6):737-744. doi: 10.1111/dme.13609. Epub 2018 Mar 24.
Advice/Support Group: Diabetes UK | helpline@diabetes.org.uk

Vitamin K deficiency bleeding I (Haemorrhagic disease of the newborn)

Surveillance Period: March 1988 – February 1990
Investigator: Dr AW McNinch, Dr H Tripp, Department of Child Health, Royal Devon; Exeter Hospital, Barrack Road, Exeter EX2 5DW
Published Paper: Haemorrhagic Disease of the Newborn in the British Isles: a two year prospective study; McNinch AW, Tripp JH; Brit. Med. J. 1991; 303: 1105-1109
Advice/Support Group: Contact | info@contact.org.uk

Vitamin K deficiency bleeding II

Surveillance Period: February 1993 – December 1994
Investigator: Dr A McNinch, Dr J Tripp, Department of Child Health, Royal Devon; Exeter Hospital, Barrack Road, Exeter EX2 5DW
Published Paper: Vitamin K deficiency bleeding in Great Britain and Ireland: British Paediatric Surveillance Unit Surveys, 1993 94 and 2001-02; McNinch A, Tripp J; Arch. Dis. Child.. 2007 Sep;92(9):759-66
Advice/Support Group: Contact | info@contact.org.uk

X-linked anhydrotic ectodermal dysplasia

Surveillance Period: June 1986 – August 1986
Investigator: Dr A Clarke, University Hospital, Heath Park, Cardiff, CF4 4XW
Published Paper: X-linked anhydrotic ectodermal dysplasia;  D Clarke; BPSU 2nd Annual Report 1987. BPSU London
Advice/Support Group: Ectodermal Dysplasia Society
Web: ectodermaldysplasia.org Email: diana@ectodermaldysplasia.org