CAROBB - Monitoring rates of congenital anomalies for surveillance purposes and research
- Principal investigator
- Jenny Kurinczuk (NPEU)
- Collaborators
- Kay Randall (NPEU (Former member)), Catherine Rounding (NPEU (Former member))
- Topics
- Congenital anomalies
- Funders
- DH Registers, DH - Healthcare Quality Directorate, Healthcare Quality Improvement Partnership, Public Health England
- Start year
- 2003
- End year
- 2014
- NPEU Contact
- Jenny Kurinczuk
Summary
Funding by the Department of Health was awarded in 2003 to maintain and expand the previously established Oxford Congenital Anomaly Register (OXCAR) to include Berkshire and Buckinghamshire. Ascertainment of congenital anomalies to the newly formed congenital anomaly register, CAROBB, is now well established. The register collects data on all fetuses in whom there is a suspicion of congenital malformation suspected prenatally and on all babies with a congenital abnormality diagnosed postnatally in a defined population. Data are downloaded electronically from CAROBB to EUROCAT (European Concerted Action on Congenital Anomalies and Twins), to NDSCR (National Down Syndrome Cytogenetic Register) and to the BINOCAR (British Isles Network of Congenital Anomaly Registers) hub. Data from all currently operating congenital anomalies registers are pooled at the BINOCAR hub and published as a national report (http://www.binocar.org/). The extension of the OXCAR congenital anomaly register into a larger population has improved the precision of prevalence estimates for the Thames Valley Region. The first report of data from the register was issued in 2008 which gives details of congenital anomalies reported to CAROBB for births 2005 to 2006 and the third report up dates this with information on births 2005-2010.
Publications
Journal Articles
- Boyd PA, Armstrong BG, Dolk H, Botting BJ, Pattenden S, Abramsky L, Rankin J, Vrijheid M, Wellesley D. Congenital anomaly surveillance in England - ascertainment deficiencies in the national system. Br Med J. 2005;330:27-9.
- Rankin J, Pattenden S, Abramsky L, Boyd PA, Jordan H, Stone D, Vrijheid M, Wellesley D, Dolk H. Prevalence of congenital anomalies in five British regions, 1991-99. Arch Dis Child. 2005;90:F374-F9.
- Calvert JK, Boyd PA, Chamberlain PC, Said S, Lakhoo K. Outcome of antenatally suspected congenital cystic adenomatoid malformation of the lung: 10 years' experience 1991-2001. Arch Dis Child Fetal Neonatal Ed. 2006;91:F26-8.
- Boyd CA, Quigley MA, Brocklehurst P. Donor breast milk versus infant formula for preterm infants: a systematic review and meta-analysis. Arch Dis Child. 2007;92(3):F169-F75.
- Armstrong BG, Dolk H, Pattenden S, Vrijheid M, Loane M, Rankin J, Dunn CE, Grundy C, Abramsky L, Boyd PA, Stone D, Wellesley D. Geographic variation and localised clustering of congenital anomalies in Great Britain. Emerging Themes in Epidemiology. 2007;4(14):9.
- Zaki M, Boyd PA, Impey L, Roberts A, Chamberlain P. Congenital myotonic dystrophy: prenatal ultrasound findings and pregnancy outcome. Ultra Obstet Gynecol. 2007;29:284-88.
- Choudhry M, Boyd PA, Chamberlain PF, Lakhoo K. Prenatal diagnosis of tracheo-oesophageal fistula and oesophageal atresia. Prenat Diagn. 2007;27:608-10.
- Ayers S, McKenzie-McHarg K, Eagle A. Cognitive behaviour therapy for post-traumatic stress disorder: case studies. Journal of Psychosomatic Obstetrics & Gynecology. 2007;28(3):177-84.
- Nieuwenhuijsen MJ, Toledano MB, Bennett J, Best N, Hambly P, de Hoogh C, Wellesley D, Boyd PA, Abramsky L, Dattani N, Fawell J, Briggs D, Jarup L, Elliott P. Chlorination Disinfection By-Products and Risk of Congenital Anomalies in England and Wales. Environ Health Perspect. 2007;116(2):216-22.
- Dolk H, Armstrong B, Lachowycz K, Vrijheid M, Rankin J, Abramsky L, Boyd PA, Wellesley D. Ambient air pollution and risk of congenital anomalies in England, 1991?1999. Occup Environ Med. 2010;67(4):223-7.
- Hinton L, Kurinczuk JJ, Ziebland S. Infertility; Isolation and the Internet: A qualitative interview study. Patient Educ Couns. 2010;81(3):436-41.
- Bishop DV, Jacobs PA, Lachlan K, Wellesley D, Barnicoat A, Boyd PA, Fryer A, Middlemiss P, Smithson S, Metcalfe K, Shears D, Leggett V, Nation K, Scerif G. Autism, language and communication in children with sex chromosome trisomies. Arch Dis Child. 2011;96(10):954-9.
- Boyd PA, Rounding C, Chamberlain P, Wellesley D, Kurinczuk JJ. The evolution of prenatal screening and diagnosis and its impact on an unselected population over an 18-year period. BJOG. 2012;119(9):1131-40.
- Fitzpatrick K, Sellers S, Spark P, Kurinczuk JJ, Brocklehurst P, Knight M. The management and outcomes of plancenta accreta, increta and percreta in the UK: a population based descriptive study. BJOG. 2014;121(1):62-70.
- Barisic I, Boban L, Greenlees R, Garne E, Wellesley D, Calzolari E, Addor M-C, Arriola L, Bergman JEH, Braz P, Budd JLS, Gatt M, Haeusler M, Khoshnood B, Klungsoyr K, McDonnell B, Nelen V, Pierini A, Queisser-Wahrendorf A, Rankin J, Rissmann A, Rounding C, Tucker D, Verellen-Dumoulin C, Dolk H. Holt Oram syndrome: a registry-based study in Europe. Orphanet J Rare Dis. 2014;9:156.
- Barisic I, Odak L, Loane M, Garne E, Wellesley D, Calzolari E, Dolk H, Addor M-C, Arriola L, Bergman J, Bianca S, Doray B, Khoshnood B, Klungsoyr K, McDonnell B, Pierini A, Rankin J, Rissmann A, Rounding C, Queisser-Luft A, Scarano G, Tucker D. Prevalence, prenatal diagnosis and clinical features of oculo-auriculo-vertebral spectrum: a registry-based study in Europe. Eur J Hum Genet. [Article]. 2014;22(8):1026-33.
- Best KE, Addor M-C, Arriola L, Balku E, Barisic I, Bianchi F, Calzolari E, Curran R, Doray B, Draper E, Garne E, Gatt M, Haeusler M, Bergman J, Khoshnood B, Klungsoyr K, Martos C, Materna-Kiryluk A, Matias Dias C, McDonnell B, Mullaney C, Nelen V, O'Mahony M, Queisser-Luft A, Randrianaivo H, Rissmann A, Rounding C, Sipek A, Thompson R, Tucker D, Wellesley D, Zymak-Zakutnia N, Rankin J. Hirschsprung's disease prevalence in Europe: A register based study. Birth Defects Research Part A: Clinical and Molecular Teratology. 2014;100(9):695-702.
- Calzolari E, Barisic I, Loane M, Morris J, Wellesley D, Dolk H, Addor M-C, Arriola L, Bianchi F, Neville AJ, Budd JLS, Klungsoyr K, Khoshnood B, McDonnell B, Nelen V, Queisser-Luft A, Rankin J, Rissmann A, Rounding C, Tucker D, Verellen-Dumoulin C, de Walle H, Garne E. Epidemiology of multiple congenital anomalies in Europe: A EUROCAT population-based registry study. Birth Defects Research Part A: Clinical and Molecular Teratology. 2014;100(4):270-6.
- Morris JK, Garne E, Wellesley D, Addor M-C, Arriola L, Barisic I, Beres J, Bianchi F, Budd J, Dias CM, Gatt M, Klungsoyr K, Khoshnood B, Latos-Bielenska A, Mullaney C, Nelen V, Neville AJ, O'Mahony M, Queisser-Luft A, Randrianaivo H, Rankin J, Rissmann A, Rounding C, Sipek A, Stoianova S, Tucker D, de Walle H, Yevtushok L, Loane M, Dolk H. Major congenital anomalies in babies born with Down syndrome: A EUROCAT population-based registry study. American Journal of Medical Genetics Part A. 2014;164(12):2979-86.
- Springett A, Draper ES, Rankin J, Rounding C, Tucker D, Stoianova S, Wellesley D, Morris JK. Birth prevalence and survival of exomphalos in England and Wales: 2005 to 2011. Birth Defects Research Part A: Clinical and Molecular Teratology. 2014;100(9):721-5.
- Bergman JEH, Loane M, Vrijheid M, Pierini A, Nijman RM, Addor M-C, Barisic I, B?res J, Braz P, Budd J, Delaney V, Gatt M, Khoshnood B, Klungs?yr K, Martos C, Mullaney C, Nelen V, Neville A, O?Mahony M, Queisser-Luft A, Randrianaivo H, Rissmann A, Rounding C, Tucker D, Wellesley D, Zymak-Zakutnia N, Bakker M, de Walle HEK. Epidemiology of hypospadias in Europe: a registry-based study. World J Urol. 2015;33(12):2159-67.
- McGivern MR, Best KE, Rankin J, Wellesley D, Greenlees R, Addor M-C, Arriola L, de Walle H, Barisic I, Beres J, Bianchi F, Calzolari E, Doray B, Draper ES, Garne E, Gatt M, Haeusler M, Khoshnood B, Klungsoyr K, Latos-Bielenska A, O'Mahony M, Braz P, McDonnell B, Mullaney C, Nelen V, Queisser-Luft A, Randrianaivo H, Rissmann A, Rounding C, Sipek A, Thompson R, Tucker D, Wertelecki W, Martos C. Epidemiology of congenital diaphragmatic hernia in Europe: a register-based study. Archives of Disease in Childhood - Fetal and Neonatal Edition. 2015;100(2):F137-F44.
- Khoshnood B, Loane M, Walle Hd, Arriola L, Addor M-C, Barisic I, Beres J, Bianchi F, Dias C, Draper E, Garne E, Gatt M, Haeusler M, Klungsoyr K, Latos-Bielenska A, Lynch C, McDonnell B, Nelen V, Neville AJ, O?Mahony MT, Queisser-Luft A, Rankin J, Rissmann A, Ritvanen A, Rounding C, Sipek A, Tucker D, Verellen-Dumoulin C, Wellesley D, Dolk H. Long term trends in prevalence of neural tube defects in Europe: population based study. BMJ. 2015;351:h5949.