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CAROBB

News

Closure of CAROBB and the establishment of a new National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)

On the 31st March 2015 CAROBB will close and functions of the register will transfer to Public Health England.

Public Health England (PHE) are establishing a new National Congenital Anomaly and Rare Disease Registration Service (NCARDRS):

NCARDRS
4150 Chancellor Court
Oxford Business Park South
Oxford OX4 2GX

Once the transfer of CAROBB to NCARDRS has happened you will receive information about the new processes of notification to the new national register.

In the meantime you should continue to collect information about congenital anomalies and you can use the CAROBB notification form for this purpose. However, please DO NOT submit the form to CAROBB but hold on to your notifications until you have received instructions from NCARDRS on how to notify anomaly cases to the new register.

More information about the closure and move is contained in the CAROBB Closure Letter.

The CAROBB team would like to thank the countless colleagues who have submitted notifications to CAROBB. Case notifications are the life blood of any register and it would not have been possible to achieve so much without the enthusiastic engagement of health professionals in Oxfordshire, Berkshire and Buckinghamshire. The latest report of information from CAROBB is available to download from the reports page.

Useful Downloads for Health Professionals

What is CAROBB?

CAROBB (Congenital Anomaly Register for Oxfordshire, Berkshire and Buckinghamshire) is a register of information about babies born with suspected or confirmed congenital anomalies. CAROBB was awarded funding by the Department of Health in 2003 to continue to maintain the previously established Oxford Congenital Anomalies Register (OXCAR), to extend it to cover the three counties. Regional registers are now being replaced by a new national registration service being established by Public Health England: NCARDRS.

Why is information collected about babies with congenital anomalies?

  • To increase our understanding of congenital anomalies and help research into their causes, treatment and prevention.
  • To monitor how good antenatal screening tests (serum screening and ultrasound scans) are at picking-up problems.
  • To look at trends - for example changes in the number of babies born with congenital anomalies, or changes in the pattern of where they are born.
  • To give health professionals information to help them advise families about their chances of having a baby with a congenital anomaly.
  • To help plan and develop NHS services.
  • To improve the national data on congenital anomalies

What information is collected?

  • Descriptions of each anomaly.
  • Details and results of any investigations carried out during pregnancy (for example, the results of any ultrasound scans).
  • Details about mother and baby.

Information about CAROBB can be obtained by contacting

Name
Prof. Jenny Kurinczuk
Role
Director, NPEU
Acting Clinical Director, CAROBB
Address
National Perinatal Epidemiology Unit (NPEU)
Nuffield Department of Population Health
University of Oxford
Old Road Campus

Oxford
OX3 7LF
Email
jenny.kurinczuk@npeu.ox.ac.uk
Tel
01865 289700
Fax
01865 289720 (confidential)

Updated: Wednesday, 05 January 2022 16:59 (v25)