Information for Parents

CAROBB BINOCAR Information Brochure

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

Information collected by CAROBB up to 2015 will continue to be held by CAROBB until arrangements are made to de-identify and store the data for research purposes. More information about the new register is available on other pages on this website including the home page.

Every parent hopes that their baby will be healthy and most babies are.

However, a few babies do have problems (abnormalities) such as cleft palate, spina bifida, or Down's syndrome. These are sometimes called congenital anomalies, congenital malformations or birth defects. Congenital anomalies affect between 3% and 5% of all babies.

Some congenital anomalies are detected during pregnancy, some are found at birth, while others become apparent only as a baby grows older.

This page provides information for parents about CAROBB. You can find the following information on this webpage:

  • What is CAROBB?
  • Why information is collected about babies with congenital anomalies?
  • What information is collected?
  • How is information collected?
  • Who sees the information?
  • Can I see the records on the Register?
  • Will the database be secure and confidential?
  • Does my name or my baby's name have to go on the Register?
  • How can I find out more about CAROBB?

What is CAROBB?

CAROBB (Congenital Anomaly Register for Oxfordshire, Berkshire and Buckinghamshire) is a database of information about babies born with suspected or confirmed congenital anomalies. It contains information about babies with congenital anomalies who were born in Oxfordshire from 1991 to 2015 and from Oxfordshire, Berkshire or Buckinghamshire from 2003 to 2015.

The original database collected information from 1991 onwards just about those babies with congenital anomalies whose mother had an Oxford (OX) postcode and the information was held by OxCAR (Oxfordshire Congenital Anomalies Register) at the John Radcliffe Hospital in Oxford.

In 2003 with funding from the Department of Health to support research active disease registers OxCAR moved to the National Perinatal Epidemiology Unit (NPEU) at the University of Oxford and was expanded to include information from Berkshire and Buckinghamshire as well as Oxfordshire.

CAROBB continued to function as a congenital anomaly register and to conduct research until April 2015 when the ‘surveillance’ function of the register transferred to Public Health England as part of a move to establish a national congenital anomaly register for England. On the 31st March 2015 CAROBB stopped collecting information about new cases, but still holds the information collected since 1991 and this continues to be held at the NPEU for research purposes.    

Why is information collected about babies with congenital anomalies?

Our aims in collecting information about congenital anomalies are to:

  • Increase our understanding of congenital anomalies and help research into their causes, treatment and prevention, and what happens to babies with congenital anomalies as they grow up.
  • Monitor how good antenatal screening tests (serum screening and ultrasound scans) are at picking-up problems.
  • 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.
  • Give health professionals information to help them give advice to families about their chances of having a baby with a congenital anomaly.
  • Help plan and develop NHS services.

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 the mother and baby; this includes names, addresses and dates of birth.

How is information collected?

Up to 31st March 2015 a member of staff from the hospitals which treat women whose baby has a congenital anomaly and babies with congenital anomalies, completed a notification and sent this to CAROBB when the anomaly was identified. From 1st April 2015 this information will be sent by staff to the Public Health England Office in Oxford. The register often received several notifications from different departments about the same baby. Information reported in the early stages was improved or confirmed later by these multiple notifications.

Names and postcodes were included on the notification form so that information could be updated on the correct case and the same baby was not counted several times.

Information was collected by CAROBB on paper and is stored electronically on a secure computer. The information relating to babies and congenital anomalies notified up to 31st March 2015 continues to be held securely by CAROBB, which is based at the National Perinatal Epidemiology Unit, at the University of Oxford. Public Health England also have a copy of this information.

Who sees the information?

There are very strict regulations controlling access to personal information - that is names and addresses. This information will only be available to members of hospital staff treating you or your baby, to those who work on CAROBB and to researchers; information is released for research under strict circumstances and only with the right approvals in place. 

Can I see the records on the Register?

Yes - you have the right to request a copy of the information held about you or your baby.

To make a request please contact:

Name
Prof. Jenny Kurinczuk
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

It will necessary for you to provide proof of identity before any information is released.

Will the database be secure and confidential?

The information recorded on CAROBB about you or your baby is confidential. It is held in a responsible way which respects the rights and privacy of individuals.

The Register follows a strict policy on security and confidentiality. This policy is available to the public on request. The register conforms to the requirements of legislation on data protection and the information security regulations of the NHS.

Does my name or my baby's name have to go on the Register?

We hope everyone will want to be included on CAROBB, to help us plan and improve services for future mothers and babies affected by a congenital anomaly. Also this will help us to conduct research to increase our understanding of congenital anomalies and help research into their causes, treatment and prevention, and what happens to babies with congenital anomalies as they grow up.

However, it is not compulsory for your information to be included and your details and the details of your baby can be removed at any time.

To request the removal of your information please contact:

Name
Prof. Jenny Kurinczuk
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

It will necessary for you to provide proof of identity before any information is removed.

How can I find out more about CAROBB?

If you have any questions or concerns regarding the information that could be held about you or your baby, or anything else about CAROBB, please contact:

Name
Prof. Jenny Kurinczuk
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