History and Funding
The Register of Patients with Particular Diseases, Patients with Congenital Anomalies was established in 1987, and data are available for cases from birth year 1981. The Register of Congenital Anomalies is currently funded by the Children’s University Hospital. The aim of the registry is to provide accurate epidemiological information regarding the occurrence of congenital anomalies in Latvia and data from birth year 2005 will be sent to EUROCAT.
Population Coverage
The Registry is population-based 1: covering all resident mothers in Latvia and presently covers about 19,250 births per year. The registry is considered to cover 100% of births.
Sources of Ascertainment
Reporting is compulsory under the legislation Cabinet of Ministers Regulation No.746 (15.09.2008). The Register employs active data collection from multiple sources including: medical genetics records, prenatal screening records, pathology labs and cytogenetic labs. Occasionally notifications are received from: paediatric surgery, ophthalmology, paediatric neurology, orthopaedics and child health services. From 2012 registry staff have access to newborn case notes within Children’s University for babies with malformation codes. This is a useful confirmatory source of information.
Babies with a congenital anomaly may be diagnosed and registered up to 18 year of age.
Maximum Age at Diagnosis
Up to 18 years of age.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legal up to 24 weeks gestation for cases of fetal malformation. The Register is notified of the majority of cases of TOPFA by the Department of Prenatal Diagnosis.
Stillbirth and Early Fetal Deaths
The official definition of stillbirth is: a fetus born with no signs of life at gestational age of 22 weeks (after 154 days) or a birthweight equal to or greater than 500g. Stillbirths are registered. Autopsy rates for 2010 were 99.1% in stillbirths, 93.8% in early neonatal deaths and 71% for infant deaths.
Exposure Data Availability
Information regarding parental occupation is collected, but the quality of this information is currently poor.
Denominators and Controls Information
Background data on all births are available from the National Newborn Registry. Data is available by maternal age groupings and by month. Information on controls is not collected.
Ethics & Consent
There is legislation in Latvia covering the protection of medical data. There is no national legislation requiring informed consent in order to register a baby with a congenital anomaly.
Address for Further Information
Dr Ieva Malniece,
Head of Register of Congenital Anomalies Centre for Diseases Prevention and Control,
Duntes 22,
RIGA,
Latvia
LV-1005
Tel: +371 25680002
Email: ieva.malniece@bkus.lv