Completed studies

Conditions for which surveillance has completed to 2006

Acute flacid paralysis
Acute rheumatic fever
Adverse neonatal outcomes of delivery or labour in water
Androgen insensitivity syndrome
Biliary atresia
Cerebral vascular disease, stroke and like illness
Cerebral oedema and death following diabetic ketoacidosis
Chemistry set poisoning
Congenital brachial palsy
Congenital cataract
Congenital cytomegalovirus
Congenital dislocation of the hip
Congenital syphilis
Congenital toxoplasmosis 1
Congenital toxoplasmosis 2
Drowning and near drowning
Early onset eating disorders
Encephalitis in early childhood
Fatal/severe allergic reactions to food ingestion
Group B streptococcal disease
Galactosaemia
Haemorrhagic shock encephalopathy syndrome
Haemolytic uraemic syndrome I
Haemolytic uraemic syndrome II
Haemophagocytic lymphohistiocytosis
Hepatitis C virus (HCV) infection
Higher order births
Inflammatory bowel disease in under 20-year olds
Insulin dependent diabetes in under fives
Internal abdominal injury due to child abuse
Invasive fungal infection in VLBW infants
Invasive Haemophilus influenzae infection
Insulin dependent diabetes in under fifteens

Juvenile dermatomyositis
Kawasaki disease
Langerhans Cell Histiocytosis (LCH)
Long term parenteral nutrition
Lowe syndrome
Measles, mumps, rubella- meningoencephalitis
Medium chain acyl-CoA dehydrogenase
Neonatal herpes 1
Neonatal necrotising enterocolitis
Non-accidental poisoning / Munchausen syndrome by proxy
Non-type 1 diabetes
Neonatal meningitis
Pyroxidine dependent seizures
Rett syndrome
Reye's syndrome
Severe complications of varicella
Severe hyperbilirubinaemia
Severe visual impairment and blindness
Subacute sclerosing panencephalitis
Subdural haematoma / effusion
Suspected fatal adverse drug reactions
Thrombosis in childhood
Thyrotoxicosis
Transient and permanent neonatal diabetes
Tuberculosis in childhood
Vitamin K deficiency bleeding I (Haemorrhagic disease of the newborn)
Vitamin K deficiency bleeding II
X-linked anhydrotic ectodermal dysplasia

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 E-Mail: cafamily.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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.org.uk

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
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

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

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 E-mail: info@childliverdisease.org

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

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

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: C/O Contact a Family, 209-211 City Road, London EC1V 1JN.
Tel: 0808 808 3555 - Free. E-mail: helpline@cafamily.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
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: C/O Contact a Family, 209-211 City Road, London EC1V 1JN.
Tel: 0808 808 3555 - Free. E-mail: helpline@cafamily.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 Papers: Congenital cytomegalovirus 17th BPSU Annual Report 2002
Advice/Support Group: Congenital CMV Associtaion, 128 NorthfieldsLane, Brixham, Devon TQ5 8RH
Tel: 01803 856496. Web: http://mysite.freeserve.com/CMVsupport

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

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 E-Mail: cafamily.org.uk

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.

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

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.info Registered Charity No. 1087843

Early onset eating disorders

Surveillance Period: March 2005 - May 2006
Investigator: Dr D Nicholls, R Lynn, Dr R Viner
Published Papers: 20th BPSU Annual report
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 Web: http://www.b-eat.co.uk

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

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: http://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, E-mail: ts@gsgnews.freeserve.co.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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.org.uk

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. 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: http://www.hrtrust.org

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

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

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: Prospective survey of childhood inflammatory bowel disease in the British Isles. A Sawczenko, B K Sandhu, R F A Logan, H Jenkins, C J Taylor, S Mian, R Lynn.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
E-mail: support@cicra.org, Web: http://www.cicra.org

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: Insulin dependent diabetes in children under five: incidence and ascertainment validation for 1992. BMJ 1995; 67:700-703
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
Dermatoglyphics, fetal growth and insulin dependent diabetes in children under five: Shield JP, Wadsworth EJ, Hobbs K, Baum JD. Arch. Dis. Child. 1995 Feb;72(2):159-60
A case-control study of environmental factors associated with diabetes in the under 5s:Wadsworth EJ, Shield JP, Hunt LP, Baum JD. 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

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: Internal abdominal injury due to child abuse. P M Barnes, CM Norton, FD Dunstan, A Kemp, D Yates, J Sibert. The Lancet 2005; 366:234-235
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.org.uk

Invasive fungal infection in VLBW infants

Surveillance Period: February 2003 - February 2004
Investigator: Dr W McGuire
Published Papers: 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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.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: 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: Health Promotion England - NHS Site

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: Incidence of Insulin Dependent Diabetes in Children Aged Under 15 Years in the British Isles During 1988. Metcalfe MA, Baum JD Brit. Med. J 1991; 302: 443-7
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

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:Symmons DP, Sills JA, Davis SM.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: dpsg@dial.pipex.com

Kawasaki disease

Surveillance Period: June 1986 - December 1992
Investigator: Dr S Hall c/o Sheffield Children's Hospital, Stevenson Building, Sheffield S10 2TH
Published Paper: Kawasaki Disease in the British Isles. A survey of management:Dhillon R, Newton L, Rudd PT, Hall SM Arch. Dis. Child.1993. 69: 631-638
Kawasaki disease - Lessons for Britain: Bissenden JG, Hall SM. 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 E-mail: kssg1sue@discover.co.uk

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: 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. Epub 2008 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 E-Mail: cafamily.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. McKeown C. 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 (International Lowe Syndrome Association)

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: National Meningitis Trust, Fern House, Bath Road, Stroud GL5 3TJ.
Tel 0845 6000 800 Lo-call Helpline Tel 01453 768000 Fax 01453 768001 e-mail: support@meningitis-trust.org.uk

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 CoA dehydrogenase deficiency in the United Kingdom: Pollitt RJ, Leonard JV Arch. Dis. Child. 1998; 79: 116-119
Neonatal screening for inborn errors of metabolism: cost, yield and outcome: Pollitt R J, Green A, McCabe CJ, et al. Health Technology Assessment 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. E-mail: info@climb.org.uk. Web: http://www.climb.org.uk

Neonatal herpes 1

Surveillance Period: June 1986 - Dec 1991
Investigator: Ms 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:Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.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 : ed. Lynn R, Nicoll A, Guy M. 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 E-Mail: cafamily.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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.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, Macleod House, 10 Parkway, London NW1 7AA
Tel: 020 7424 1000 Fax:020 7424 1001 E-mail: info@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. DE Holt, S Halket, J de Louvois, D Harvey. 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 Lo-call Helpline Tel: 01453 768000 Fax: 01453 768001
E-mail: support@meningitis-trust.org.uk

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: Baxter P Epidemiology of pyridoxine dependent and pyridoxine responsive seizures in the UK.Arch Dis Child. 1999 Nov;81(5):431-3.
Advice/Support Group: Climb, Climb Building,176 Nantwich Road, Crewe, CW2 6BG.
Tel: 0870 770 0326 Fax: 0870 770 0327 E-mail: info@climb.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. In Mental Retardation and Medical Care. Roosendaal JJ (ed.). 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 e-mail: 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 Papers: 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

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
Published Papers: 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 E-Mail: cafamily.org.uk

Severe hyperbilirubinaemia

Surveillance Period: May 2003 to May 2005
Investigator: Dr D Manning
Published Papers: Prospective surveillance study of severe hyperbilirubinaemia in the newborn in the UK and Ireland, Arch Dis Child. Fetal Neonatal Ed., 92, F342-F346
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

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: LOOK , Queen Alexandra College, 49 Court Oak Road, Birmingham B17 9TG.
Tel: 0121 428 5038 Fax: 0121 427 9800 E-mail: info@look-uk.org

Subacute sclerosing panencephalitis

Surveillance Period: June 1986-June 2001
Investigator: Dr E Miller, PHLS, 61 Colindale Avenue, London NW9 5EQ
Published Papers: Miller C, Farrington CP, Harbart K. The epidemiology of Subacute Sclerosing Panencephalitis in England and Wales 1970-1989 Int. J. Ep. 1992; 21:(5):998-1006. Jin L, Richards,A, Brown,DWG.
Development of a dual target PCR for detection and characterization of measles virus in clinical specimens. Molec and Cell Probes 1996;10:191-200
The epidemiology of subacute sclerosisng panencephalitis in England and Wales 1990-2002. C Miller, N Andrews, M Rush, H Munro, L Jin, E Miller. 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 haematoma/effusion. 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 E-mail: enquiries@chit.demon.co.uk

Suspected fatal adverse drug reactions

Surveillance Period: June 2002 - June 2003
Investigator: Dr K Cheng, Professor T Stepehenson
Published Papers: 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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.org.uk

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 E-Mail: cafamily.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

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, 10 Queen Anne Street,London W1M 0BD.
Tel: 020 7323 1531 Fax:020 7636 6112 Careline E-mail: info@diabetes.org.uk

Tuberculosis in childhood

Surveillance Period: December 2003 – February 2005
Investigators: Dr D Shingadia, Dr S Teo
Published Paper: 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; British Paediatric Surveillance Unit Childhood Tuberculosis Study Group. 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 E-Mail: cafamily.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 a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.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 Vitamin K Deficiency Bleeding: McNinch A, Tripp J.
Published paper: Vitamin K deficiency bleeding in Great Britain and Ireland: British Paediatric Surveillance Unit Surveys, 1993 94 and 2001-02. Arch. Dis. Child.. 2007 Sep;92(9):759-66
Advice/Support Group: Contact a Family, 209-211 City Road, London EC1V 1JN Tel (020) 7608 8700 E-Mail: cafamily.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. Calrke D. BPSU 2nd Annual Report 1987. BPSU London
Advice/Support Group: Ectodermal Dysplasia Society, 108 Charlton Lane, Cheltenham GL53 9EA. Tel 01242 261332 E-mail: diana@ectodermaldysplasia.org