Western Australian women asked to participate in research on pre-natal testing

Mothers of children with Tuberous Sclerosis living in Western Australia are invited to be interviewed as part of a new research project at Curtin University.

The researchers are particularly seeking families where the child’s diagnosis came with no family history of TSC, also called a ‘de novo’ mutation.

To participate, contact Sarah Long, a genetic counsellor, on phone 9340 1242 or by email: [email protected]

Information about the study for potential participants:

Testing for health conditions in the baby. Prenatal tests are offered to pregnant women to monitor the baby’s health. They can include screening tests and diagnostic tests.

A new technology which has been used in Western Australia since late 2012, is Non-Invasive Prenatal Testing (NIPT). Initially NIPT just looked for a limited panel of chromosome conditions, such as Down syndrome. However the test panel is expanding to test for a wider range of conditions.

We would like to find out what women understand about current testing methods, what they think and understand about expanded screening using NIPT and what attitudes women hold towards prenatal testing, disability and termination of pregnancy in this setting.

The interview will be approximately one hour long and be recorded for transcribing.

This study is part of my postgraduate studies at Curtin University. The results of this study will be published in peer reviewed journals and will be used to improve policy and services for women in Western Australia.

If you have any further questions, please contact: Sarah Long on phone 9340 1242 or by email: [email protected]ov.au.

or Professor Peter O’Leary (9266 1866) or by email: [email protected]

This project has been approved by the Curtin University Human Research Ethics Committee (Approval Number HR xx/20I4). The Committee is comprised of members of the public, academics, lawyers, doctors and pastoral carers. If needed, verification of approval can be obtained either by writing to the Curtin University Human Research Ethics Committee, c/- Office of Research and Development, Curtin University, GPO Box U1987, Perth, 6845 or by telephoning 9266 2784 or by emailing [email protected]