MEDICAL BIRTH REGISTER, DESCRIPTION OF FILE

as of 1 November 2005
(In accordance with section 10 of the Personal Data Act 523/1999)

1. CONTROLLER

Name: National Research and Development Centre for Welfare and Health (STAKES)
Postal address: PO Box 220
Postcode: FI-00531 Helsinki
Visiting address: Lintulahdenkuja 4, 00530 Helsinki
Tel.: +358 20 610 6000
Fax: +358 20 610 7324

2. PERSON RESPONSIBLE FOR THE REGISTER

Name: Eija Vuori
Position: Planning Officer
Postal address: STAKES / Stakestieto / Medical Birth Register
PO Box 220, FI-00531 Helsinki
Tel.: +358 20 610 7244, +358 20 610 6000
Fax: +358 20 610 7324
E-mail: firstname.surname@thl.fi

3. NAME OF THE REGISTER

Medical Birth Register

4. GROUNDS FOR MAINTAINING THE REGISTER

Statutory

Act on National Personal Data Registers Kept under the Health Care System (556/1989)
Decree on National Personal Data Registers Kept under the Health Care System (774/1989: Sections 1 and 3)
Act on the National Research and Development Centre for Welfare and Health (1073/1992: Section 2)

5. PURPOSE OF THE REGISTER

Statistics and research. The purpose is to collect data in order to develop and organise maternity care, obstetrical services and neonatal care.

6. DATA SUBJECTS

The Medical Birth Register was established in 1987. The reforms of the Register in 1990, 1996 and 2004 were aimed at improving its reliability.

The Register includes data on live births and on stillbirths of foetuses with a birth weight of at least 500 g or with a gestational age of at least 22 weeks, as well as data on the mothers.

The Register incorporates a data file on small preterm infants for which data have been collected since 1 November 2004. The data file contains additional data collected by means of a separate form concerning all live births in Finland with a birth weight of less than 1500 g or with a gestational age at birth of less than 32+0 weeks. The data are collected until the infant's age corresponds to 42 weeks' gestation.

7. DATA CONTENT OF THE MEDICAL BIRTH REGISTER

Data content of the Medical Birth Register

1. Personal data of mother
- personal identity code
- surname and forenames
- profession
- municipality of residence
- nationality
- marital status
- cohabiting

2. Previous pregnancies and deliveries
- previous pregnancies
- previous deliveries

3. Present pregnancy and its monitoring
- check-ups during pregnancy
- date of first check-up visit
- mother's weight and height before pregnancy
- mother's smoking habits during pregnancy
- risk factors and interventions relating to pregnancy
- diseases during pregnancy (ICD-10 codes)
- hospital care during pregnancy

4. Delivery
- maternity hospital
- place of birth
- best estimate of gestational age at the time of delivery
- onset of last period
- duration of delivery
- method of delivery
- pain relief in labour
- other procedures relating to delivery
- diagnoses relating to pregnancy and delivery
- mother's diagnoses during delivery (ICD-10 codes)

5. The infant
- date of birth, control character of the personal identity code, time of birth
- sex
- infant born alive or dead
- number of foetuses = number of infants born
- letter indicating the order of birth in multiple pregnancy
- weight at birth
- length at birth
- head circumference
- Apgar score at 1 minute and 5 minutes
- pH of umbilical blood

6. Data of the infant by the age of 7 days or at discharge
- care interventions relating to the infant by the age of 7 days
- infant's diagnoses by the age of 7 days
- infant at the age of 7 days or at discharge from hospital
- length of stay in hospital for mother

Data content of the data file Small Preterm Infants

1. Personal data of mother
- personal identity code
- surname and forenames

2. Personal data of infant
- date of birth, control character of the personal identity code, time of birth
- surname and forenames
- sex
- best estimate of gestational age at the time of delivery
- weight at birth
- length at birth
- head circumference
- number of foetuses = number of infants born
- letter indicating the order of birth in multiple pregnancy
- maternity hospital
- other basic data

3. Pregnancy
- mother's diseases and complications during the present pregnancy
- mother's medication before delivery

4. Delivery
- rupture of amniotic membrane (water breaking)
- diastolic flow in umbilical artery
- Apgar score at 1 minute, 5 minutes and 10 minutes
- pH and BE of umbilical artery blood
- pH and BE of umbilical vein blood
- method of delivery
- presentation at birth
- resuscitation procedures/treatment in delivery room

5. Treatment received by the infant up to 42 weeks' gestation
- breathing disorders
- breathing support
- surfactant treatment
- broncopulmonary dysplasia
- medication
- infusion routes
- necrotising enterocolitis
- procedures and other treatment
- sepsis
- ultrasonography of the brain
- examinations of the fundus of the eye
- auditory examination
- electroencephalogram (EEG)
- magnetic resonance imaging (MRI) of the brain

6. Diagnoses for the infant up to 42 weeks' gestation
- diagnoses
- death diagnoses

7. The infant's situation at 42 weeks' gestation
- the infant's situation when its age corresponds to 42 weeks' gestation
(discharged, in hospital, dead)
- diet at discharge or at 42 weeks' gestation
- weight, length and head circumference at discharge or at 42 weeks' gestation

8. All hospitals where the infant has been treated up to 42 weeks' gestation
- hospitals and wards where the infant has been treated
- transferred to the next hospital
- where the infant has been transferred
- date, and the name and position of the person who has filled in the form

8. REGULAR DATA SOURCES OF THE REGISTER

Maternity hospitals (maternity wards and neonatal wards)
Population Information System of the Population Register Centre
Statistics Finland, Population Statistics: Causes of Death

The use of the data sources is based on permissions granted by the Population Register Centre and Statistics Finland

9. REGULAR DISCLOSURE OF REGISTER DATA

STAKES is authorised to disclose data in the Medical Birth Register to researchers for scientific research purposes after consulting the Data Protection Ombudsman.

10. RIGHT OF ACCESS TO DATA AND RIGHT TO RECTIFY AN ERROR

The data subjects have no right of access to and no right to rectify the data entered into the register, because the Medical Birth Register 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.

11. INFORMATION ON THE PROCESSING OF DATA

The controller is not liable to inform the data subjects on data processing, because the Medical Birth Register is a statutory register.

12. PRINCIPLES CONCERNING PROTECTION OF THE FILES

The data stored in the Medical Birth Register are confidential under section 4 of the Act on National Personal Data Registers Kept under the Health Care System (556/1989).

The Medical Birth Register functions in accordance with the STAKES data protection and security guidelines (updated on 1 December 2004). The material in the Register is classified in category 3, which means intensified data protection.

The materials of the Medical Birth Register, both in paper form and in electronic form, 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.

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