History and Funding
The Congenital Anomalies Registry of Navarra (RACEHNA) started collecting data in 2003, and it was officially established in 2013 (ORDEN FORAL 69/2013). It is a population-based registry that collected data from 1991. The Registry is situated in the Complejo Hospitalario de Navarra and it is funded by the Regional Health Authority (SNS-Osasunbidea).
Population Coverage
The registry covers the whole Comunidad Foral de Navarra, an autonomous community in northern Spain, bordering the Basque Country, La Rioja, and Aragon in Spain and Aquitaine in France. Navarra consists of 272 municipalities and has a total population of 601,874 (2006), of whom approximately one-third live in the capital city, Pamplona (195,769 pop.), and one-half in the capital's metropolitan area (315,988 pop).
All major congenital anomalies that occur in pregnancies of mothers residing in Navarra are registered. The annual number of births in this region is about 6.000. Minor anomalies are excluded according to EUROCAT criteria.
Sources of Ascertainment
Notification to the Registry is voluntary. The Registry is situated in the Genetic´s Department of the Hospital, which attends all congenital anomalies that need genetic diagnosis in Navarra (pre- and postnatal). The Department is also responsible of the Down Syndrome Prenatal Screening.
Doctors of the Genetic´s Department actively notify all cases with congenital anomalies and cromosomopathies detected to the Registry.
Additionally, Registry staff, actively search new cases and up-date cases from:
- The Data Base of the Genetic´s Department
- Hospital´s CMBD, which collects all hospitalization episodes occurred in Navarra and codifies them with ICD-9-CM codes.
Complementary information is obtained from Metabolic Disorder Registry, Cardiac Department and Registry of TOPFAs.
Maximum Age at Diagnosis
Childhood, up to 15 years. All cases are followed with a different periodicity depending on the clinical manifestations and diagnosis.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legal up to 22 weeks of gestation. All terminations of pregnancy regardless of the gestational age at termination are registered.
Stillbirth and Early Fetal Deaths
Stillbirth is considered if birthweight ≥ 500g OR gestational age > 23 weeks. Early fetal deaths (spontaneous abortions) are only included when a genetic diagnosis is stablished.
Exposure Data Availability
Information on maternal drug use, maternal and paternal diseases and occupations, outcome of previous pregnancies, is collected from the clinical records.
Denominators and Controls Information
Birth statistics data are obtained from the National Statistics Institute (INE) (www.ines.es). The Registry does not collect information on controls.
Ethics & Consent
The law “Ley Orgánica 15/1999, de 13 de diciembre, de Protección de Datos de Carácter Personal” covers the protection of medical data in Spain. The registry does not require patient/parent explicit consent for case registration.
Address for Further Information
Maria Antonia Ramos Arroyo, MD, PhD
Email: ma.ramos.arroyo@navarra.es
Amaya Bengoa Alonso
Email: abengoaa@navarra.es
Complejo Hospitalario de Navarra,
Calle Irunlarrea, 4
31008 Pamplona,
Spain
Tel: +34-848429243
Fax: +34-848429924
Last updated: 19.02.2017