50 years of the H ungarian C ongenital A bnormality R egistry

The mandatory notification of patients (“cases”) with different congenital abnormalities ( CA s) diagnosed from birth until the end of the first postnatal year by medical doctors was ordered by the M inistry of H ealth in H ungary in 1962 and this CA ‐registry was continued as the H ungarian C ongenital A bnormality R egistry ( HCAR ) based on the international recommendation from 1970. The primary objective of the HCAR has been to determine the baseline birth prevalence rate of different CA s as reliably as possible, with three secondary objectives: (i) to detect temporal and/or spatial clusters of CA s; (ii) to evaluate increasing or decreasing time trends of CA s; and (iii) to assist in the planning of medical and social services for children and families affected by CA so that appropriate resources are allocated efficiently and effectively. This paper summarizes the activities and the evolution of the HCAR over the past 50 years (1962–2011) including the H ungarian C ase‐ C ontrol S urveillance of C ongenital A bnormalities for postmarketing surveillance of drug teratogenicity and prevention of CA s; the special evaluation of unidentified multiple CA s; the H ungarian S urveillance of G erminal M utations and several international collaborations. In conclusion, H ungary enjoyed optimal conditions for the HCAR due to a centralized state health system; all deliveries took place in inpatient clinics; the quality of pediatric care was high and pediatricians notified most CA s. Autopsy was mandatory in infant death, the staff of the HCAR did not consider this CA ‐registry only as a statistical system but the H ungarian C enter for C ongenital A nomaly C ontrol and the H ungarian C ase‐ C ontrol S urveillance of C ongenital A bnormalities based on the HCAR worked with close collaboration with the parents in order to promote the possible good quality of life of their affected children and to prevent their risk of recurrence.