Member details

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History:

The official registration of congenital anomalies in former Czechoslovakia begun in 1964. The Czechoslovak registry was a founding member of the Clearinghouse in 1974. After the dissolution of Czechoslovakia in 1993 - the registry continues on the area of the Czech Republic as the National Registry of Congenital Anomalies of the Czech Republic. ,

Size and coverage::

The Registry is country-wide and covers all births in the Czech Republic (approximately 100.000 annual births). All cases of congenital anomalies (ICD-10 Q00-Q99) are included, from 2016 the registry includes also rare diseases (OMIM, SSIEM and ORPHAnet codes are included). The registry include all cases of congenital anomalies and/or rare diseases diagnosed in the livebirths, stillbirths, and fetuses during prenatal diagnostics.

Legislation and funding:

The registration is compulsory by the national law and financed by the government. No informed consent for the registration of particular case is required. The data are collected and stored by the Institute of Health Information and Statistics of the Czech Republic.,The cooperation of the registry with ICBDSR is supported by the donation projects of the Czech Ministry of Health of the Czech Republic (OZS/41/4142/2018 project for 2018). ,The legislation follows those laws:,* Zákon c. 372/2011 Sb., o zdravotních službách a podmínkách jejich poskytování (zákon o zdravotních službách),* Vyhláška c. 373/2016 Sb., o predávání údaju do Národního zdravotnického informacního systému,* Zákon c. 101/2000 Sb., o ochrane osobních údaju a o zmene nekterých zákonu, ve znení pozdejších predpisu.,* Vestník MZ CR, cástka 14, Rocník 2001

Sources of ascertainment:

Reports are obtained from delivery units, neonatal, pediatric, child surgery, pathology, clinical genetics, fetal medicine and ultrasound diagnostics departments, and genetic laboratories.

Exposure information:

Some exposure information is available on malformed infants, at present none on controls.

Background information:

http://www.uzis.cz/,http://www.vrozene-vady.cz/

Addresses and staff:

Antonin Sipek, MD, PhD - Programme director: registrvvv@vrozene-vady.cz,Antonin Sipek Jr, MD: antonin.sipek@lf1.cuni.cz,,Corresponding adress:,Department of Medical Genetics,Thomayer Hospital,Videnska 800,140 59,Prague 4,CZECH REPUBLIC,,Website: http://www.vrozene-vady.cz/

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International Clearinghouse for Birth Defects

International Clearinghouse for Birth Defects