Frequent questions

1. What does SWCAR stand for?

South West Congenital Anomaly Register.

2.What is a Congenital Anomaly?

A congenital anomaly is any condition or malformation present before or at the time of birth. It includes structural malformations, genetic and chromosomal defects, congenital infections and inborn errors of metabolism. Most congenital anomalies are detected antenatally or in the neonatal period. Some conditions, such as Tay-Sachs Disease, present later in childhood. Please refer to our inclusion list for further details.

3. Do I have to ask the parents or child for consent to report the anomalies?

You are not required to obtain explicit consent from parents or children. Full information on consent is given on the Data Protection page. We do ask you to display posters and leaflets providing information about SWCAR in all reporting areas.

4. When should I fill in a form?

At whatever stage you become aware of a suspected or actual anomaly in the pregnancy, postnatal period or childhood. We collect data on first diagnosis up the child's 18th birthday.

5. Should I notify all anomalies?

There is an exclusion list of minor anomalies. This can be downloaded from the Reporting Anomalies page on this site or ordered via the Order Materials page. If in doubt notify. Include all terminations for congenital anomaly and any miscarriage affected by an anomaly.

6. What should I do if the anomaly is only suspected?

Please notify us of all suspected anomalies unless they are on our exclusion list. We may receive confirmation from another source. If not we will aim to obtain follow-up information at a later stage. Please state clearly that the anomaly is SUSPECTED.

7. I don't have all the information required, should I still send a form?

Yes, send us the details you have available. Please send as much information as you can. Mother's name, baby's name, postcode, dates of birth, NHS numbers, hospital numbers, place of birth and estimated delivery date or gestation at delivery are all particularly useful. You can use a hospital address label* to save time but please remember to add the EDD and dates of any scans or tests.

8. Why is it important to notify the EDD (Estimated Date of Delivery)?

The Estimated Date of Delivery allows us to identify when the birth is due. We need this information to alert us to follow up suspected antenatal anomalies. Also, if we do not have the EDD or a date of birth, we cannot allocate the case to a given year and the case will not be included in published data.

9. Another department has filled in a form, should I still do one?

Yes, multiple notifications produce a more complete and accurate register. Different departments can provide additional information on the mother, baby or anomaly that was not previously notified.

10. An anomaly was suspected antenatally but the baby was normal at birth, should I notify this?

Yes, we try to follow up outcomes on all suspected anomaly cases. These cases are important for the audit of antenatal diagnostic tests.

11. Do I have to fill in a form or can I send the information in another way?

As long as we get information we don't mind how it comes in e.g. copies of reports or letters. The more information the better.

12. Where can I get forms?

You can order notification forms via the Order Materials page or download individual copies from the Reporting Anomalies page on this site.

13. Can I send notifications electronically?

SWCAR has strict procedures covering the electronic transfer of data. Please contact us prior to transfer to ensure current procedure is adhered to. Patient data can only be sent to SWCAR via NHS Net.

Please do not send confidential information by normal e-mail. Please do not include patient identifiable information in the main body of any e-mail.

14. Does SWCAR pass data to anyone else?

SWCAR sends information to BINOCAR (British Isles Network of Congenital Anomaly Registers) every six months, as requested, for surveillance purposes. BINOCAR have a strict code of conduct regarding data protection and confidentiality. Data is also exchanged with anomaly specific registers such as the National Down Syndrome Cytogenetic Register (NDSCR) and the Craniofacial Anomalies Network (CRANE). Anonymised data is also sent on a regular basis to the European register EUROCAT.

No data will be released for research unless ethical approval has been obtained.

15. Can I apply to use SWCAR data for research purposes?

SWCAR will consider applications for use of register data only where Research Ethics Committee approval has been gained. Applications must be made in writing to the SWCAR Chair Professor Peter Fleming. Please contact us for details.

Details of application for ethical approval can be found on the COREC (Central Office for Research Ethics Committees ) website: www.corec.org.uk

16. How do anomaly registers in the UK co-operate?

SWCAR is a member of the British Isles Network of Congenital Anomaly Registers (BINOCAR).

17. Who funds the register?

SWCAR has ongoing approval for funding through the United Bristol Healthcare Trust (UBHT) Service Level Agreement (SLA) . This has been agreed by collective NHS Commissioning on behalf of all South West Primary Care Trusts.