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King Edward Memorial Hospital

WA Register of Developmental Anomalies

Frequently Asked Questions

There are several questions that are commonly asked when a child is diagnosed with a developmental anomaly.

1. What are Health (Western Australian Register of Developmental Anomalies) Regulations 2010?

The Health (Western Australian Register of Developmental Anomalies) Regulations 2010 regulations came into effect on January 7, 2011. The regulations make it law for medical practitioners and hospitals to notify cases of developmental anomalies to the Western Australian Register of Developmental Anomalies (WARDA).

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2. What is a developmental anomaly?

For the purposes of these regulations, a developmental anomaly means:

  • Cerebral palsy or
  • Anomalies that affect structure or function, which are present before birth and are diagnosed by six years of age.

Structural means how the body is built and functional means how the body works. Structural developmental anomalies include conditions such as spina bifida, congenital dislocation of the hip and congenital heart defects. Functional anomalies include conditions such as cystic fibrosis and haemophilia. Fetal alcohol syndrome and chromosomal anomalies such as Down syndrome are also developmental anomalies.

Developmental anomalies are also sometimes called birth defects, congenital malformations or congenital anomalies.

Some anomalies are not included unless they need treatment, eg some birthmarks, extra finger or toe.

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3. Is the Western Australian Register of Developmental Anomalies new?

No. WARDA is a combination of the WA Birth Defects Registry and the WA Cerebral Palsy Register, both of which have been in operation for several decades.

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4. Why has the name changed?

The new name brings together the WA Birth Defects Registry and the WA Cerebral Palsy Register. It also better reflects the conditions on which information is collected, as, although some anomalies are diagnosed before birth, not all anomalies are obvious at birth and many may not be diagnosed until several years after birth.

The new name was chosen by WA parents and consumers.

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5. Why do we need a register?

We need the Register to be able to:

  • Monitor the number of cases of developmental anomaly in WA;
  • Plan, monitor and evaluate services for the prevention and alleviation of developmental anomalies and the care of persons with a developmental anomaly in WA;
  • Compile and publish general or statistical information relating to developmental anomalies; and
  • Carry out research into the causes of developmental anomalies and the effectiveness of prevention, screening and treatment services.
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6. What information is collected on the register?

WARDA collects information on the child and his or her mother and father, including:

Child: name, address, date of birth, gender, Aboriginality/non-Aboriginality, birth measurements, diagnostic information for each developmental anomaly (up to a total of 10 anomalies and the age at which each anomaly was diagnosed. Information is collected on all diagnoses up until the age of 6 years.

Mother (and father where appropriate): name, address, date of birth

Information is also collected on pregnancy termination or stillbirth, whether the baby died and date of death.

The person who provided the information to the register and the date they provided it is also recorded.

Information on names and dates of birth are needed so that the same child is not counted more than once. Information on the register will be linked with other information collected by law on births and deaths in Western Australia.

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7. Who provides this information to the register?

By law, the chief executive officer of the hospital in which the diagnosis of a developmental anomaly is made and/or the doctor making the diagnosis or caring for the patient diagnosed are responsible for the notification. This is required within six months of the diagnosis. Failure to do so may result in a fine.

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8. Will the doctor tell the parents that information has been provided to the Register?

The doctor should explain that s/he is required, by law, to inform the Register of the developmental anomalies he or she has diagnosed or that occur in children he or she is caring for. The doctor may also give the parents a brochure about the Register.

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9. Can parents find out what information is held by WARDA about their child?

Yes. Parents have a right to know if there is information on the Register about their child and if so, to be given a copy of that information. Requests for this information must be made in writing by completing the WARDA Information Request Form.

If you require assistance with completing these forms, you can contact WARDA or the Health Consumers Council on 1800 620 780 or info@hconc.org.au.

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10. Can parents ask for information to be removed from the register?

Yes. A parent can ask for identifying information about their child to be removed from the Register after it has been kept on the Register for at least six years. Requests to remove identifying information must be made in writing by completing the WARDA Removal of Identifying Information Form. Information which is not identifying information may be retained on the register.

If you require assistance with completing these forms, you can contact WARDA or the Health Consumers Council on 1800 620 780 or info@hconc.org.au.

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11. Where can I obtain more information about the regulations or the Register?

If you have further questions, please do not hesitate to contact WARDA.

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