For parents

Every parent hopes that their baby will be healthy. Some babies are born with developmental anomalies such as cerebral palsy, spina bifida, Down syndrome or phenylketonuria (PKU).

Parents who have a child who has a developmental anomaly often have many questions including

  • Why does my child have an anomaly?
  • If we have another child, will the same or similar anomaly occur?
  • Did my family history, the place where I live or the substances I was exposed to during my pregnancy contribute to the occurrence of the developmental anomaly?

These questions are often difficult to answer, especially if there is little known about the anomaly and the reasons for its occurrence. The collection of accurate information about developmental anomalies helps to answer these and other questions.

What information is collected by the Register?

The Register 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, and, if the baby has died, the 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 each child is only counted once. Information on the Register will be linked with other information collected by law on births and deaths in Western Australia.

If you would like to see a more detailed list of some of the more common developmental anomalies that WARDA keeps records for please click here. There is also a list of developmental anomalies that are not recorded, available here. Please note that these lists are not exhaustive and many less common anomalies are not listed.

Why is the information collected?

WARDA maintains an accurate database of developmental anomalies which occur in WA, and has done so for several decades as the WA Birth Defects Register and the WA Cerebral Palsy Register.

The information held by WARDA is used 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.
How information is collected?

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 by law for the notification, as a result of the Health (Western Australian Register of Developmental Anomalies) Regulations 2010 Notification is required within six months of the diagnosis. Register staff gather further details from medical records and/or doctors if required. Voluntary notification is also accepted from other sources.

How is my privacy protected?

We take privacy seriously and all information held by the Register is maintained securely. Register staff abide by the WA Health Code of Conduct which highlights confidentiality as an important part of Responsible Care.

Reports released from the Register are in statistical form, without identification of 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. Families who do not want to be contacted for research purposes can tell the Register this.

Can I access my record

Accessing your record

WARDA respects your right to know what information is held on the Register about you or your child. If you would like to obtain this information, please complete the WARDA Information Request Form, or by contacting the Register, and mail it to WARDA.

Removing identifying information

WARDA respects your right to request that identify information about yourself or your child be removed from the database. This can only be done after the information has been held by WARDA for six years.

If you wish to remove your details, please complete the WARDA Removal of Identifying Information Form, or by contacting the Register, and mail it to WARDA.

In both instances, you will be required to provide evidence of identity and relationship to the individuals whose information you are requesting.

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.

Who can access the information?

On average, 30-40 requests for information or data are received by WARDA each year. These requests come from State or Federal Departments of Health, health professionals and institutions in WA, Australia or overseas as well as the general public, the media and students.

Community organisations such as support groups also contact the Register for information.

Reports released from the Register are in statistical form, without identification of 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. Families who do not want to be contacted for research purposes can tell the Register this.

Family Stories

This is a new section in the WARDA website, and we invite you to contribute stories of your own experiences.

We welcome your personal stories about your, or your child’s, life: the hurdles and delights of everyday life and the challenges you face.

If you would like to include your story on this site, please contact the WARDA staff.

Parents' Perspective

Contact us

Tel: (08) 6458 2735
Fax: (08) 6458 2636
Email: gareth.baynam@health.wa.gov.au

Postal Address

King Edward Memorial Hospital
PO Box 134
Subiaco  WA  6904

Research Staff

Dylan Gration
Email: dylan.gration@health.wa.gov.au

Edwina Rudy
Email: edwina.rudy@health.wa.gov.au

Jennifer Reemeijer
Email: jennifer.quick@health.wa.gov.au

Linda Watson
Email: linda.watson@health.wa.gov.au