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EEPD Volume 3. Datasets

K. Datasets for Some Neonates (Babies) 

Subsection Editor: Needed

If interested in the possibility of editing this subsection  Click here 

Discussion Links: None specific so far. Use www.eepd.org.uk


I. Congenital Anomaly Registers - General

The past confusion of several incompatible congenital anomaly registers has now greatly resolved by the existence of the 

EUROCAT - European Congenital Anomalies and Twins Register (2009)

All Perinatal IT systems should now, either directly or indirectly use the Eurocat categories and definitions which may be found as a drop-down menu under the heading “select the anomaly” on the EUROCAT website at  http://www.eurocat-network.eu/


West Midlands Congenital Anomaly Register

This Proforma includes the following confusing information: 


Source:  European Congenital Anomalies and Twins (EUROCAT), 


National Congenital Anomaly Register (UK). (Started in 1964?)

  • Introduction (Awaiting Scanning)
  • Form SD56 (Awaiting Scanning)
  • “Cut & Paste” version (In preparation)




II. Congenital Anomaly Registers - Specific


Cranio-Facial Anomalies Register

  • 1999 Form (Awaiting Scanning)
  • “Cut & Paste” version (In preparation)



National Down Syndrome Cytogenetic Register


V. Still-birth Certificates


Certificates of Still-birth (1953)

Under the Births and Death Registration Act, 1953

  • Scan of Originals (Awaiting Scanning)
  • “Cut & Paste” version (In preparation)


Certificates of Still-birth - Scotland (1965)

Under Section 21(2) of the Registration of Births, Deaths and Marriages (Scotland) Act (1965)

  • Scan of Originals (Awaiting Scanning)
  • “Cut & Paste” version (In preparation)


VI. Neonatal Death Certificates


Certificates of Neonatal Death (1953, 1985)

Medical Certificate of Cause of Death of Live-Born Children dying within the first twenty-eight days of Life. Under the Births and Death Registration Act, 1953. (Form prescribed by the Registration of Births, deaths and Marriages (Amendment)(No.2) Regulations 1985)

VII.  Post-Mortem Request Datasets

In time, samples of existing request form datasets will be documented in EEPD. Volume 12. Proformas, with a suggested “best practice” dataset accessible from here


VIII. Post-Mortem Consent Forms

In time, samples of existing post-mortem consent forms will be documented in EEPD. Volume 12. Proformas, with a suggested “best practice” sample accessible from here


IX.  Confidential Enquiries into Perinatal Deaths Datasets

Over the years, such confidential enquiries have been undertaken by organisations with a variety of different names.  Some randomly collected samples of the data they have tried to collect are set out below.  What for many years was called CESDI (Confidential Enquiry into Stillbirths and Deaths in Infants) was later superseded by CEMACH (Confidential Enquiry into Maternal and Child Health) which since 1 July 2009 has become CMACE (Centre for Maternal and Child Enquiries).


As with so many similar proformas, when (if ever) the flow pattern of chronologically arranged questions and all allowable answers are significantly standardised internationally, the workload of clinical staff in filling such returns will be greatly reduced, and the quality and quantity of data analysed could so easily be improved!   


CESDI “Why Mothers Die” (2000-2002)

  • Link to Full Report (PDFs available)
  • Scan of Rapid Version (Awaiting Scanning)
  • “Cut & Paste” version (In preparation)

CESDI (1996)

CESDI (1993)

  • Scan of Original (Awaiting Scanning)
  •        “Cut & Paste” version (In preparation)

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