Information collected by the Western Australian Register of Developmental Anomalies
The Western Australian Register of Developmental Anomalies WARDA collects information on both a child who has a developmental anomaly and his or her mother and father.
Information collected about the child includes:
- name, address and date of birth (this information is needed so each child is only counted once. Information recorded by WARDA is linked with other births and deaths information collected by law in Western Australia)
- gender (male or female)
- Aboriginality or 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).
Information collected on the mother (and father where appropriate) includes:
- name
- address
- date of birth.
Other information collected includes:
- information on pregnancy termination or stillbirth, and, if the baby has died, the date of death
- the person who provided the information to WARDA and the date it was provided.
How information is collected
The law states that WARDA must be notified within 6 months of a diagnosis of a developmental anomaly by either:
- the chief executive officer of the hospital in which the diagnosis is made
- the doctor making the diagnosis or caring for the patient.
Voluntary notification is also accepted from other sources.
WARDA staff gather further details from medical records and doctors as required.
Are parents told that information has been provided to WARDA?
Yes. The doctor should explain that the law requires WARDA to be informed of developmental anomalies that have either:
- been diagnosed
- occurred in a child the doctor is caring for.
Your privacy
WARDA takes privacy seriously and all information it holds is maintained securely. Register staff must follow the WA Health Code of Conduct which highlights confidentiality as an important part of responsible care.
Reports released from WARDA are in statistical form and do not identify individuals, doctors or hospitals.
Confidential information is provided for research purposes only. Parties who request confidential information must adhere to WA Health’s guidelines of confidentiality.
Families who do not want to be contacted for research purposes can tell the Register this by telephone or mail.
Accessing WARDA records about you or your child
You have the right to request a copy of information that is held about you or your child.
If you would like to obtain this information, please either:
Removing identifying information from WARDA
WARDA respects your right to request that identify information about yourself or your child be removed from the database. While your information cannot actually be removed, it can be de-identified after 6 years.
If you wish to remove your details or those of your child, please either:
Proof of identity
Both forms require you to provide evidence of your identity and, if your request relates to another person, your relationship to that person.
If you require assistance
Contact WARDA if you require assistance completing these forms.
For independent help on any of these privacy matters, please phone the Health Consumers Council on
telephone 1800 620 780 or email info@hconc.org.au
Who else can ask to access this information?
On average, 30 to 40 requests for information or data are received by WARDA each year from various sources, including:
- State Government or Australian Government Departments of Health
- health professionals and institutions in WA, Australia or overseas
- general public
- media
- students.
Community organisations such as support groups also contact WARDA for information.
Reports released from WARDA are in statistical form and do not identify individuals, doctors or hospitals. It is unusual for named data to be provided, and those who request this information must go through several rigorous steps before gaining access.
Please contact WARDA if you do not want to be contacted for research purposes.
More information
Phone the Western Australian Register of Developmental Anomalies on 9340 2735.
Remember
- WARDA collects information on the child and his or her mother and father.
- The law states that WARDA must be notified within 6 months of a diagnosis of a developmental anomaly.
- All information held by the Register is maintained securely.
Acknowledgements
Western Australian Register of Developmental Anomalies (WARDA)
This publication is provided for education and information purposes only. It is not a substitute for professional medical care. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your healthcare professional. Readers should note that over time currency and completeness of the information may change. All users should seek advice from a qualified healthcare professional for a diagnosis and answers to their medical questions.