Data collection methodology


From 2004, CEMACH has collected epidemiological and clinical data on each baby delivering after 22 completed weeks of gestation showing no signs of life and each live birth resulting in a neonatal death using its Perinatal Death Notification (PDN) form. The PDN form for 2004 can be seen as Appendix A.

These data are collected by a network of local health professionals coordinated by the CEMACH regional offices. Every maternity unit within England, Wales and Northern Ireland has a CEMACH co-ordinator who notifies the CEMACH regional office of any deaths within the age range collected. This data collection is supplemented by additional reporting of deaths from child health systems and from local congenital anomaly registers where data sharing arrangements have been in place for many years. This multiple source reporting leads to a very high level of ascertainment of deaths.

Data are then compiled centrally and cross-validated with registration data on stillbirths and neonatal deaths from the Office for National Statistics (ONS). Any cases that have been omitted from usual reporting sources are then included in CEMACH figures.

Perinatal mortality data collected by CEMACH differ from registration data collected by the ONS with a higher number of cases reported to CEMACH. CEMACH is currently conducting a linkage exercise with registration data collected by the ONS to determine the exact nature of this difference and the possible explanations for it.

Data in this report are presented using birth cohorts based on date of delivery. Denominator data on all live births used to calculate rates are obtained from the ONS for England and Wales,1,2 the General Registrar's Office (GRO) for Northern Ireland3 and additional information for England is obtained from the delivery record of Hospital Episode Statistics.4 Data sources are referenced throughout the report.