BPSU - Past studies

Details of completed studies of the British Paediatric Surveillance Unit, listed alphabetically by condition.

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Acute flacid paralysis 
Surveillance Period: July 1991 - June 1994
Investigator: Dr N Begg, Glaxosmithkline, Stockley Park West, UXBRIDGE, United Kingdom, UB11 1BT 
Published paper: 
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Adverse neonatal outcomes of delivery or labour in water 
Surveillance Period: April 1994- April 1996
Investigator: Ms 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 
Advice/Support Group: National Childbirth Trust 
 
 
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: M Erlewyn-Lajeuness, LP Hunt, P Heath, A Finn, Anaphylaxis as an adverse event following immunisation in the UK and Ireland, Arch Dis Child 2012; 97; 487-490
Advice/Support Group: 
 
 
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
 
 
Bacterial meningitis in babies <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 published online 4 July 2014. Access the most recent version at DOI: 10.1093/cid/ciu514
Advice/Support Group: Meningitis Research Foundation, Midland Way, Thornbury, Bristol BS35 2BS
Tel: 01454 281 811 Fax: 01454 281 094
 
 
Biliary atresia
Surveillance Period: March 1993 - February 1995
Investigator: Dr JP McKiernan, Dr D Kelly, Liver Unit, Birmingham Childrens'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
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 , 36 Great Charles Street, Birmingham B3 3JY.
Tel: 0121 212 3839 Fax: 0121 212 4300
 
 
Cerebral vascular disease, stroke and like illness
Surveillance Period: February 2001- February 2002
Investigator: Dr F Kirkham, Southampton University Hospital; Dr A Williams
Published Papers: Cerebral vascular disease 17th BPSU Annual Report 2002
Advice/Support Group: Stroke Association, 240 City Road, London, EC1V 2PR
Tel: 020 7566 0300 Fax: 020 7490 2686 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, 10 Queen Anne Street,London W1M 0BD.
Tel: 020 7323 1531 Fax:020 7636 6112 Careline E-mail: info@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
 
 
Chylothorax development in infants and children in the UK
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: C Haines, B Walsh, M. Fletcher, P. Davis, Chylothorax development in infants and children in the UK; Arch. Dis. Child doi: 10.1136/archdischild-2013-304364
Advice/Support Group: 
Web:                 E-Mail: 
 
 
Congenital 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
Advice/Support Group: CLIMB - CAH UK Support Group, 2 Windrush Close, Flitwick Bedfordshire, MK45 1PX
Tel: 0800 652 3181
Web: www.livingwithcah.com Email:  
 
 
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 a Family, 209-211 City Road, London EC1V 1JN.
Tel: 0808 808 3555 - Free.
 
 
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 
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: Contact a Family, 209-211 City Road, London EC1V 1JN.
Tel: 0808 808 3555 - Free.
 
 
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 Papers: Congenital cytomegalovirus 17th BPSU Annual Report 2002
Advice/Support Group: Congenital CMV Associtaion, 128 NorthfieldsLane, Brixham, Devon TQ5 8RH
Tel: 01803 856496. Email: info@cmvaction.org.uk Web: http://cmvaction.org.uk/
 
 
Congenital dislocation of the hip 
Surveillance Period: April 1993 - July 1993
Investigator: Dr C Dezateux, 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
Screening for congenital dislocation of the hip in the newborn and young infants. Dezateux C, Godward S. Edinburgh 1997; Churchill Livingstone
Advice/Support Group: STEPS, Warrington Lane, Lymm WA13 0SA 
Tel: 0871 717 0044. E-mail: info@steps-charity.org.uk Web: www.steps-charity.org.uk
 
 
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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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; DOI: 10.1111/1471-0528.13950.
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Congenital toxoplasmosis  1
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.
Screening for Toxoplasmosis during Pregnancy: Peckham CS, Logan S. Arch. Dis. Child. 1993; 68: 3-5
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Congenital toxoplasmosis 2
Surveillance Period: July 2002 - July 2004
Investigator: Dr R Gilbert, Centre for Paediatric Epidemiology, Institute of Child Health, 30 Guilford Street, London WC1 1EH, Mr Miles Stanford, Ed Guy
Published Papers: Congenital toxoplasmosis 17th BPSU Annual Report 2002
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700.
 
 
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, Tel: 020 7886 1145 E-mail: c.ani@imperial.ac.uk
Published Paper: C Ani, R Reading, R Lynn, S Forlee, E Garralda, Incidence and 12-month outcome of non-transient childhood conversion disorder in the UK and Ireland, British Journal of Psychiatry (2013) 202, 413-418
Advice/Support Group: Young Minds, Suite 11, Baden Place, Crosby Row, London, SE1 1YW Tel: 020 7089 5050 E-mail: ymenquiries@youngminds.org.uk
 
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. 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
 
 
Early onset eating disorders
Surveillance Period: March 2005 - May 2006
Investigator: Dr D Nicholls, R Lynn, Dr R Viner 
Advice/Support Group: Beating Eating Disorders (BEAT), 103 Prince of Wales Road, Norwich  NR1 1DW. Tel : 0845 1414. B-eat youth line Tel: 0845 634 7650 0
 
 
Encephalitis in early childhood
Surveillance Period: October 1998-October 2001
Investigator: Dr K N Ward, Consultant Virologist/Honorary Senior Lecturer, Dept of Virology, University College London, Windeyer Building, 46 Cleveland St, London W1P 6DB. Tel: 020 7679 9134 (24 hour cover) Fax: 020 7580 5896 E-mail: k.n.ward@ucl.ac.uk. Professor E M Ross,
Professor of Community Paediatrics, Mary Sheridan Centre, Guy's, King's & St Thomas' School of Medicine, 405 Kennington Road London SE11 4QW.
Published Papers:  KN Ward, NJ Andrews, CM Verity, E Miller, EM Ross,. Encephalitis Human herpes viruses-6 and 7 each cause significant neurological morbidity in Britain and Ireland. Arch Dis Child. 2005;90;619-62233
Advice/Support Group: Encephalitis Support Group, 7b Saville St, Malton, North Yorkshire YO177LL
Tel: +44 (0) 1653 699 599 Email: mail@encephalitis.
 
 
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 C F Macdougall, A J Cant, and A F Colver. Arch. Dis. Child. 2002; 86: 236-239.
Advice/Support Group: The Anaphylaxis Campaign, PO Box 275, Farnborough GU14 7SX.
Tel: 01252 542029 Fax: 01252 377140
 
 
Group B streptococcal disease 1
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 SW17ORE
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, PO Box 203, Haywards Heath RH16 1GF.
Tel: 01444 416176 Fax: 0870 803 0024 E-mail: info@gbss.org.uk Web: www.gbss.org.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, 31 Cotysmore Road, Sutton Coldfield, B75 6BJ. 
Tel: 0121 378 5143 Web: www.galactosaemia.org Email: sue@galactosaemia.org
 
 
Genital Herpes in children under eleven years of age
Surveillance Period: April 2007 - April 2008
Investigator: Dr R Reading, Consultant paediatrician, Norfolk and Norwich University Hospital, Colney Lane, Norwich, NR4 7UY 
Published Paper: R Reading, G Hughes, J Hill, G Debelle; Genital Herpes in Children Under 11 Years and Investigations for Sexual Abuse, Arch. Dis. Child. 2011; 96 (8); pp.752-7
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Gonorrhoea, Syphillis, Chlamydia and Trichomonas in Children aged one to thirteen years of age
Surveillance Period: January 2010 - January 2012
Investigator: Dr R Reading, Consultant paediatrician, Norfolk and Norwich University Hospital, Colney Lane, Norwich, NR4 7UY 
Published Paper: R Reading, K Rogstad, G Hughes, G Debelle, Gonnorrhoea, chlamydia, syphillis and trichomonas in children under 13 years of age: national surveillance in the UK and Republic of Ireland; Arch. Dis. Child doi: 10.1136/archdischild-2013-304996
Advice/Support Group: WellChild 16 Royal Crescent, Cheltenham, Gloucester, GL50 3DA Tel 0845 458 8171
 
 
Group B streptococcal disease 1
Surveillance Period: February 2000 - March 2001
Investigator: Dr P Heath,Paediatric Infectious Disease Unit and St George's Vaccine Institute, St George's Hospital, London, SW17 0RE
Published Paper: PT Heath, G Balfour, AM Welsner, A Efstratlou, TL Lamagni, H Tighe, LAF O'Connell, M Cafferkey, NQ Verlander, A Nicoll, AC McCartney on behalf of the PHLS GBS Working Group; Group B streptococcal disease in UK and Irish infants younger than 90 days; The Lancet 2004; 363 (9405); pp.292-4
Advice/Support Group: Group B Strep Support Group, PO Box 203, Haywards Heath, West Sussex, RH16 1GF Tel: 01444 416 176
 
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: C Verity, LStellitano, AM Winstone, N Andrews, J Stowe E Miller; Guillain-Barre syndrome and H1N1 influenza vaccine in UK children; The Lancet Vol 378, 29 Oct 2011, pp.1545-1546
C Verity, L Stellitano, AM Winstone, J Stowe, N Andrews, E Miller, Pandemic A/H1N1 2009 influenza vaccination, preceding infections and clinical findings in UK children with Guillain-Barre syndrome, Arch. Dis. Child, published online 28 February 2014. Access the most recent version ar DOI: 10.1136/archdischild-2013-304475
Advice/Support Group: Guillain-Barre Support Group, Woodholme House, Heckington Business Park, Station Road, Heckington, Sleaford, Lincolnshire, NG34 9JH Tel: 0800 374 803
Web: http://www.gbs.org.uk E-Mail: 
 
 
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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
 
Haemolytic uraemic syndrome I 
Surveillance Period: June 1986 - December 1989
Investigator: Dr M Taylor, Birmingham Childrens 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), PO Box 159, Hayes UB4 8XE. Tel 0800 731 4679
 
 
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:  RM Lynn, SJ O’Brien, CM Taylor, GK Adak, H Chart, T Cheastry, JE Cola, IA Gillespie, ME Locking, WJ Reilly, et al. Childhood Haemolytic Urameinc Syndrome, United Kingdom and Ireland; Emerg Infect Dis. 2005: 11(4):590-6
Support Group: Haemolytic Uraemic Syndrome Support (HUSH), PO Box 159, Hayes UB4 8XE. Tel 0800 731 4679
 
 
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 , 18 Western Road, Wylde Green, West Midlands B73 5SP. 
Tel: +44 (0)121 355 5137 E-mail: info@hrtrust.org Web: www.hrtrust.org
 
 
Haemophilus influenza b vaccination failure 
Surveillance Period: September 1992 - August 1998
Investigator; Dr P Heath, St Georges Hospital 
Published Paper: 
Advice/Support Group: 
 
 
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 , 36 Great Charles Street, Birmingham B3 3JY.
Tel: 0121 212 3839 Fax: 0121 212 4300 E-mail: info@childliverdisease.org Web: childliverdisease.org
 
 
Higher order births
Surveillance Period: February 1989 - December 1989
Investigator: Professor 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, Queen Charlotte and Chelsea Hospital, Goldhawk Road, London W6 0XG.
Tel: 020 8383 3519 Fax: 020 8383 3041 E-mail: mbf@ic.ac.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 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
 
 
Inflammatory bowel disease in under 20-year olds
Surveillance Period: June 1998-June 1999
Investigator: Professor B Sandhu, Dr A Sawcenko. Royal Hospital for Sick Children, St Michaels Hill, Bristol BS2 8BJ
Published Paper: ;A Sawczenko, B K Sandhu, R F A Logan, H Jenkins, C J Taylor, S Mian, R Lynn; Prospective survey of childhood inflammatory bowel disease in the British Isles; The Lancet 2001; 357: 1093-94 
Advice/Support Group: National Associations for Crohns and Colitis , Parkgate House, 356 West Barnes Lane, Motspur Park KT3 6NB
Tel: 020 8949 6209 Administration, Information & Helpline, Fax: 020 8942 2044
 
 
Insulin dependent diabetes in under fives
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 Papers: E Wadsworth, J Shield, L Hunt; Insulin dependent diabetes in children under 5: incidence and ascertainment validation for 1992; BMJ 1995; 67:700-703
JP Shield, RJ Gardner, EJ Wadsworth, ML Whiteford, RS James, DO Robinson, JD Baum, IK Temple; Aetiopathology and genetic basis of neonatal diabetes; Arch. Dis. Child. 1997; 76: F39-F42
JP Shield, EJ Wadsworth, K Hobbs, JD Baum; Dermatoglyphics, fetal growth and insulin dependent diabetes in children under 5 years;  Arch. Dis. Child. 1995 Feb;72(2):159-60
EJ Wadsworth, JP Shield, LP Hunt, JD Baum; A case-control study of environmental factors associated with diabetes in the under 5 years; Diabetic Medicine 1997; 14(5): 390-6
Advice/Support Group: Diabetes UK, Macleod House, 10 Parkway, London NW1 7AA.
Tel: 3020 7424 1000 Fax:020 7424 1001. E-mail: info@diabetes.org.uk Web: Diabetes.org.uk
 
 
Insulin dependent diabetes in under fifteens 
Surveillance Period: February 1988 - December 1988
Investigator: Professor J D Baum, c/o Dr E Wadsworth, Institute of Child Health, Royal Hospital for Sick Children, Bristol 
Published paper: MA Metcalfe, JD Baum; Incidence of Insulin Dependent Diabetes in Children Aged Under 15 Years in the British Isles During 1988;  Brit. Med. J 1991; 302: 443-7
Advice/Support Group: Diabetes UK, 10 Queen Anne Street, London W1M 0BD. Tel: 020 7323 1531  
 
 
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 Papers: PM Barnes, CM Norton,  FD Dunstan, A Kemp, D Yates, J Sibert; Internal abdominal injury due to child abuse; The Lancet 2005; 366:234-235
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Intussusception in children aged less than 12 months
Surveillance Period: March 2008 - March 2009
Investigator: Prof B Taylor, D JC Cameron, S Marven, Dr H El Bashir
Published Papers: L Samad, M Cortina-Borja, H El Bashir, AG Sutcliffe, S Marven, JC Cameron, R Lynn, B Taylor; Intussusception incidence among infants in the UK and Republic of Ireland: A pre-rotvirus vaccine prospective surveillance study; Vaccine 2013 Aug 28; 31 (38): 4098-102
Advice/Support Group:
Web:             Email:
 
 
Invasive fungal infection in VLBW infants
Surveillance Period: February 2003 - February 2004
Investigator: Dr W McGuire
Published Papers: L Clerihew, TL Lamagni, P Brocklehurst, W McGuire; Invasive fungal infection in VLBW infants; Arch Dis Child Fetal Neonatal Ed. 2006 May;91(3):F188-92 
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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; Lancet 1997; 349: 1197-202
Advice/Support Group: Health Promotion England - NHS Site
 
 
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: DP Symmons, JA Sills, SM Davis; The incidence of juvenile dermatomyositis: results from a nationwide study; Brit. Journ. Rheum. 1995; 34: 732-736
Advice/Support Group: Myositis Support Group,146 Newtown Road, Woolston, Southampton SO19 9HR.
Tel: 023 8044 9708 Fax: 023 8039 6402 E-mail: msg@myositis.org.uk Web; www.myositis.org.uk
 
 
Kawasaki disease 1
Surveillance Period: June 1986 - December 1992
Investigator: Dr S Hall c/o Sheffield Children's Hospital, Stevenson Building, Sheffield S10 2TH
Published Paper: R Dhillon, L Newton, PT Rudd, SM Hall; Management of Kawasaki Disease in the British Isles; Arch. Dis. Child.1993. 69: 631-638
JG Bissenden, SM Hall ; Kawasaki Syndrome: Lessons for Britain; Brit. Med. J. 1990; 300: 1025-1026
Advice/Support Group: Kawasaki Support Group, 13 Norwood Grove, Potters Green, Coventry, CV2 2FR. Tel/Fax: 024 7661 2178 Web: www.patient.co.uk/support/kawasaki-support-group
 
 
Langerhans Cell Histiocytosis (LCH)
Surveillance Period: June 2003 - June 2005 
Investigator: Prof. Louise. Parker, Paediatric Epidemiologist, Newcastle University,
Sir James Spence Institute, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP UK 
Published Paper: JA Salotti, V Nanduri, MS Pearce, L Parker, R Lynn, KP Windebank; Incidence and clinical features of Langerhans cell histiocytosis in the UK and Ireland.  Arch Dis Child. 2009 May;94(5):376-80.Epub2008 Dec 5. 
Advice/Support Group: Histiocytosis Research Trust, 18 Western Road, Wylde Green, Sutton Coldfield, West Midlands, B73 5SP UK 
Tel:0121 355 5137 Email: info@hrtrust.org Web: www.hrtrust.org
 
 
Long-term parenteral nutrition
Surveillance Period: Feb 1992 - April 1992
Investigator: Professor 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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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: C McKeown; Lowe Syndrome.  BPSU 2nd Annual Report. 1997. BPSU London
Advice/Support Group: Lowe Syndrome Association , 29 Gleneagles Drive, Penwortham, Preston, PR1 0JT.
Tel: 01772 745070
E-mail: info@lowesyndrome.org Web: http://lowesyndrome.org (International Lowe Syndrome Association)
 
 
 
Malaria in Childhood
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: S Ladhani, M Garbash, CJ Whitty, PL Chiodini, RJ Aibara, FA Riordan, D Shingadia, Prospective, National Clinical and Epidemiologic Study on Imported Childhood Malaria in the United Kingdom and the Republic of Ireland. Paediatric Infectious Disease Journal, 29 (5); pp.434-438
Advice/Support Group: 
 
 
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: HC Maguire, NT Begg, SC Handford; Meningoencephalitis associated with MMR vaccine; Communicable Disease Report 1991; 1 (6): R57-R59
Advice/Support Group: National Meningitis Trust, Fern House, Bath Road, Stroud GL5 3TJ.
Tel 0845 6000 800 Lo-call Helpline Tel 01453 768000 Fax 01453 768001
 
 
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: RJ Pollitt, JV Leonard; Prospective surveillance study of medium-chain acyl-CoA dehydrogenase deficiency in the UK;  Arch. Dis. Child. 1998; 79: 116-119
RJ Pollitt, A Green, CJ McCabe et al. Neonatal screening for inborn errors of metabolism: cost, yield and outcome;  Health Technol Assess Report 1997
Advice/Support Group: Climb, Climb National Information and Advice Centre for Metabolic Diseases. 176 Nantwich Road, Crewe, CW2 6BG 
Tel: 0800 652 3181 Freephone Family Service Helpline, 0870 770 0326 Fax: 0870 770 0327.
 
 
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: AP Johnson, M Sharland et al.; Enhanced surveillance of methicillin-resistant Staphylococcus aureus (MRSA) bacteraemia in children in the UK and Ireland; Arch Dis Child. 2011 Jun;96(6):e1.
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
Neonatal herpes 1
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: P Tookey, CS Peckham; Neonatal herpes simplex virus infection in the British Isles; Paediatric and Perinatal Epidemiology 1997; 10: 432-442
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Neonatal Herpes 2
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
Published Paper:
Advice/Support Group: The Herpes Viruses Association, 41 North Road, London N7 9DP, Tel: (020) 609 9061
 
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: R Lynn, A Nicoll, M Guy; Neonatal necrotising enterocolitis; BPSU 11th Annual Report 1996/7. London 1998
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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: RJ McClure, PM Davis, SR Meadow, JR Sibert; The epidemiology of Munchausen Syndrome by Proxy, Non-accidental poisoning and Non-accidental suffocation;  Arch. Dis. Child. 1996; 75: 57-61
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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: L Haines, KC Wan, R Lynn, TG Barrett, JP Shield; Rising incidence of type 2 diabetes in children in the United Kingdom; Diabetes Care. 2007; 30(5):1097-1101
Advice/Support Group: Diabetes UK, 10 Queen Anne Street, London W1M 0BD. Tel: 020 7323 1531 Fax:020 7636 6112 Careline E-mail: info@diabetes.org.uk Web: 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: DE Holt, S Halket, J de Louvois, D Harvey; Neonatal meningitis in England and Wales: 10 years on; Arch Dis Child Fetal Neonatal Ed 2001;84:F85-F89 F85 
Advice/Support Group: National Meningitis Trust, Fern House, Bath Road, Stroud GL5 3TJ. Tel 0845 6000 800  Tel 01453 768000 
 
 
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: P Baxter; Epidemiology of pyridoxine dependent and pyridoxine responsive seizures in the UK; Arch Dis Chil. 1999; 81(5); 431-3.
Advice/Support Group: Climb, Climb Building,176 Nantwich Road, Crewe, CW2 6BG.Tel: 0870 770 0326 Fax: 0870 770 0327
 
 
Rett syndrome
Surveillance Period: April 1990 - June 1990
Investigator: Dr A Kerr, Quarrier's Homes, Bridge of Weir, Renfrewshire, PA1 3SA
Published paper:  JJ Roosendaal (ed.); Rett Syndrome: British Longitudinal Study (1982-1990) and 1990 Survey. 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 Syndrome Association UK , 113 Friern Barnet Road, London N11 3EU.Tel 020 8361 5161 Fax 020 8368 6123
 
 
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 Papers: RM Hardie, LH Newton, JC Bruce, JF Glasgow, AP Mowat, JB Stephenson, SM Hall; The changing clinical pattern of Reye's syndrome 1982-1990; 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 of the UK, 15 Nicholas Gardens, Pyrford, Woking GU22 8SD.
Tel: 01932 346843
 
 
Scleroderma
Surveillance Period: July 2005 - July 2007 
Investigator: Dr A Herrick 
Published Papers: A Herrick, H Ennis, M Bhushan, A Silman, E Baildam. Incidence of childhood linear scleroderma and systemic sclerosis in the UK and Ireland; Arthritis Care & Research 2010; 62 (2): 213–218 
Advice/Support Group: Raynauds and Scleroderma Association, 112 Crewe Road, Alsager, Cheshire, ST7 2JA.
Freephone: 0800 917 2494 (for UK enquiries only)
 
 
Severe complications of varicella
Surveillance Period: November 2002 - November 2003
Investigator: Dr C Bramley
Published Papers: Severe complications of varicella 17th BPSU Annual Report 2002
JC Cameron, G Allan, F Johnston, A Finn, PT Heath, R Booy; Severe complications of chickenpox in hospitalised children in the UK and Ireland. Arch Dis Child. Dec;92(12):1062-6. 
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Severe hyperbilirubinaemia
Surveillance Period: June 2003 - June 2005
Investigator: Dr Donal Manning, Department of Paediatrics, Wirral Hospital, Arrowe Park, Wirral CH49 5PE
Published Papers: Published paper: D Manning, P Todd, M Maxwell, MJ Platt; Prospective surveillance study of severe hyperbilirubinaemia in the newborn in the UK and Ireland; Arch Dis Child Fetal Neonatal Ed 2007; 92 (3); pp.342-46 
Advice/Support Group: Children's Liver Disease Foundation , 36 Great Charles Street, Birmingham B3 3JY. Tel: 0121 212 3839  
 
 
Severe neonatal hypernatraemia
Surveillance Period: May 2009 - May 2010
Investigator: Dr Sam Oddie, Bradford Royal Infirmary, Duckworth Lane, Bradford BD9 6RJ
Published Paper: SJ Oddie, V Craven, K Deakin, J Westman, A Scally; Severe neonatal hypernatraemia: a population based study; Arch Dis Child Fetal Neonatal Ed. 2013 Sep;98(5):F384-7
Advice/Support Group: 
Web:   E-Mail: 
 
 
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: J Rahi, C Noriko on behalf of the British Childhood Visual Impairment Study Group (BCVISG.); Severe visual impairment and blindness in children in the UK:  Lancet 2003; 362: 1359-1365
Advice/Support Group: LOOK , Queen Alexandra College, 49 Court Oak Road, Birmingham B17 9TG.
Tel: 0121 428 5038 Fax: 0121 427 9800 
 
 
Subacute sclerosing panencephalitis
Surveillance Period: June 1986-June 2001
Investigator: Dr E Miller, PHLS, 61 Colindale Avenue, London NW9 5EQ
Published Papers: C Miller, CP Farrington, K Harbart; The epidemiology of Subacute Sclerosing Panencephalitis in England and Wales 1970-1989; Int. J. Ep. 1992; 21:(5):998-1006.
C Miller, N Andrews, M Rush, H Munro, L Jin, E Miller; The epidemiology of subacute sclerosisng panencephalitis in England and Wales 1990-2002; Arch Dis Child. 2004;89(12):1145-8
Advice/Support Group: Encephalitis Support Group, 44a Market Place, Malton, YO17 7LH
 
 
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: C Hobbs, A-M Childs, J Wynne, J Livingston and A Seal; Subdural heamatoma and effusion in infancy: epidemiological study; Arch. Dis. Child.2005;90;952-955
Advice/Support Group: Children's Brain Injury Trust, Radcliffe Infirmary, Woodstock Road, Oxford, OX2 6HE.
Tel/Fax: 01865 224786
 
 
Sudden unexpected early postnatal collapse
Surveillance Period: November 2008-November 2009
Investigator: Dr JC Becher, Dr A Lyon, D S Bhushan, Royal Infirmary of Edinburgh
Published Paper: Dr JC Becher, Dr A Lyon, D S Bhushan; Unexpected collapse in apparently healthy newborns - a prospective study of a missing cohort of neonatal deaths and near-death events; Arch. Dis. Child Fetal Neonatal Ed. 2012 Jan; 97 (1): F30-4
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Suspected fatal adverse drug reactions
Surveillance Period: June 2002 - June 2003
Investigator: Dr K Cheng, Professor T Stepehenson
Published Papers:  K Cheng et al.; Identification of suspected fatal adverse drug reactions by paediatricians: a UK surveillance study; Arch. Dis. Child. 2008 Jul;93(7):609-11
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Thrombosis in childhood 
Surveillance Period: February 2001 - February 2003
Investigator: Dr B Gibson, Dr P Bolton-Maggs
Published Papers: Thrombosis in childhood 16th BPSU Annual Report 2001 
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
Thyrotoxicosis
Surveillance Period: September 2004 – September 2005
Investigator: Dr S Williamson
Published Paper: 19th BPSU Annual Report. 2005
Advice/Support Group: British Thyroid Foundation, 2nd Floor, 3 Devonshire Place, Harrogate, HG1 4AA Tel: 01423 709 448
 
 
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: S Adalat, T Dawson, SJ Hackett, JE Clark, Toxic shock syndrome surveillance in UK children; Arch. Dis. Child doi: 10.1136/archdischild-2013-304741
 
 
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: JP Shield, RJ Gardner, EJ Wadsworth, ML Whiteford, RS James, DO Robinson, JD Baum, IK Temple; Aetiopathology and genetic basis of neonatal diabetes: Arch. Dis. Child. 1997; 76: F39-F42
Advice/Support Group: Diabetes UK, 10 Queen Anne Street, London W1M 0BD.Tel: 020 7323 1531 Fax:020 7636 6112
 
 
Tuberculosis in childhood
Surveillance Period: December 2003 – February 2005
Investigators: Dr D Shingadia, Dr S Teo
Published Paper: SS Teo, A Riordan, M Alfaham, J Clark, MR Evans, M Sharland, V Novelli, JM Watson, P Sonnenberg, A Hayward, J Moore-Gillon, D Shingadia; Tuburculosis in the United Kingdom and Republic of Ireland; Arch Dis Child. 2009 Apr;94(4):263-7
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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: AW McNinch, JH Tripp; Haemorrhagic Disease of the Newborn in the British Isles: a two year prospective study; Brit. Med. J. 1991; 303: 1105-1109 
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
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  
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700
 
 
X-linked anhydrotic ectodermal dysplasia
Surveillance Period: June 1986 - August 1986
Investigator: Dr A Clarke, University Hospital, Heath Park, Cardiff, CF4 4XW
Published paper: D Clarke; X-linked anhydrotic ectodermal dysplasia;  BPSU 2nd Annual Report 1987. BPSU London
Advice/Support Group: Ectodermal Dysplasia Society, 108 Charlton Lane, Cheltenham GL53 9EA. Tel 01242 261332