Register of Congenital malformations

Description of file

as of 15 January 2013 
(In accordance with section 10 of the Personal Data Act 523/1999)

Controller

Name: National Institute of Health and Welfare    (THL)
Postal address: PO Box 30
Postcode: FI-00271 Helsinki
Street address: Mannerheimintie 166, Helsinki, Finland
Tel.: +358 29 524 6000

Person responsible for the register

Name: Sonja Kiuru-Kuhlefelt
Position: Chief Physician
Postal address: THL / Information Services / Register of Congenital Malformations, P.O. Box 30, 00271 Helsinki, Finland
Tel.: +358 29 524 7524
E-mail: [email protected]
Further information on the Malformation Register

Name of the register

Register of Congenital Malformations

Grounds for maintaining the register

Statutory

  • Act on the National Institute for Health and Welfare (668/2008)

Purpose of the register

  • Surveillance of congenital anomalies 
  • Statistics
  • Research.

Data subjects

The Register of Congenital Malformations contains national-level data on congenital chromosomal and structural anomalies, as well as a few other congenital anomalies like congenital hypothyroidism and teratomas, detected or suspected in stillborn and live born infants and foetuses. Data on some 5000 new cases with congenital anomalies are annually reported to the Register, of which more than 2000 are major congenital anomalies.

The Register of Congenital Malformation was established on 29 December 1962. Registration of anomaly case data began on 1 January 1963.

Types of data in the register

Mother / woman

  • name
  • personal identification code
  • municipality of residence 
  • nationality (Finnish or other)
  • previous pregnancies (number)
  • previous deliveries (number)
  • previous stillbirths (number)
  • previous spontaneous abortions (number)
  • previous terminations of pregnancy (number)
  • previous terminations of pregnancy performed for foetal indications (number)

Data on present pregnancy

  • mother's / woman's profession / work / employment
  • mother's / woman's diseases and pregnancy-related specific problems, week of gestation
  • mother's / woman's medication and vaccinations, week of gestation
  • other exposures, week of gestation
  • foetal screenings and diagnostics during pregnancy, week of gestation and the original reason for foetal examinations (screening, maternal age, an irregular course of the pregnancy, etc.)
  • number of foetuses

Infant / foetus

  • name
  • personal identification code or date of birth / termination of pregnancy
  • gestational age
  • delivery / termination of  pregnancy hospital
  • type of birth (live birth or stillbirth, termination of pregnancy, miscarriage)
  • sex
  • letter indicating the order of birth in multiple pregnancy
  • weight at birth
  • date of death, if applicable

Congenital anomalies

  • verbal diagnosis
  • ICD-codes for diagnosis
  • pattern of the anomaly (isolated, multiple anomalies, syndrome)
  • etiology of the anomaly (confirmed or suspected)
  • time of detecting the anomaly (during pregnancy, neonatal period, etc.)
  • detection of anomalies during pregnancy (diagnostic method, week of gestation, trimester)
  • further testing after birth or termination of pregnancy for anomaly detection
  • chromosomal and DNA testing and test results
  • X-ray and ultrasound examinations, etc.
  • autopsy
  • other examinations

Anomalies in family members (family members' personal identification not registered)

  • possible case number in the Malformation Register
  • type of family relationship (mother, father, brother, sister, etc.)
  • verbal diagnosis
  • ICD-codes for diagnosis

Data on the notification of the anomaly

  • type of notification (notification form, other notification etc.)
  • notifying unit of health care
  • date of receiving and date of processing the notification

Regular data sources of the register

a) Health care authorities, institutions and professionals (physicians, hospitals, prenatal and child-welfare clinics)
b) Cytogenetic laboratories
c) Medical Birth Register. Care Register for Health Care, including Information on Outpatient Services in Specialised Health Care. Register of Induced Abortions. Register of Visual Impairment
d) Statistics Finland: Cause-of-Death Statistics
e) National Supervisory Authority for Welfare and Health (Valvira)

Regular disclosure of register data

Register data are not disclosed regularly.

FinData is authorised to disclose data in the Register of Congenital Malformations to researchers for scientific research purposes. 

Right of access to data and right to rectify erroneous data

The data subjects have no right of access to their register data and no right to rectify the data entered into the register, because the Register of Congenital Malformations is a statutory statistical and research register and the personal data stored in it are not used in decision-making or care concerning the data subjects.

Information on the processing of data

The controller is not liable to inform the data subjects of data processing, because the Register of Congenital Malformations is a statutory register.

Principles concerning protection of the register files


The Register of Congenital Malformations functions in accordance with the THL data security guidelines, which are part of the THL plan for general contingency and protection.

The manual materials of the Register of Congenital Malformations are kept in locked premises. Access to the premises is given only to certain named employees responsible for the Register. Electronic material is protected by user names and passwords. The Register uses electronic access control software (auditing log).

Updated:

Homepage for the statistics

Congenital anomalies

On our website

All THL's register descriptions