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Hope Dignity Awareness
Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

Testing for HD

According to international guidelines, if you are 18 years of age or older and have a blood relative who has been diagnosed with HD, you are eligible for the predictive test. This test is performed through local genetic services. If you are under 18 years of age and have questions about testing please seek advice from your local HD association.

What is predictive testing?DNA

Predictive testing is performed by extracting your DNA from a blood sample to identify whether you are carrying the faulty Huntingtin gene. The testing usually consists of genetic and psychosocial counselling, a neurological examination and a blood test. The time between the initial blood test and receiving your results is generally 6 to 8 weeks. The test for HD cannot determine when symptoms will begin or how severe symptoms are likely to be.


It’s a personal choice

There is no right or wrong decision whether to undergo a predictive test, it is a personal choice. Before making a decision:

  • Consider all relevant information so you can make an informed choice (i.e. around future career and family planning, insurance, etc.)
  • Consider seeking support to help understand all possible outcomes and make sure you’re emotionally ready to make the decision

What to expect

The testing process usually includes the following steps:

  • An initial appointment with a genetic counsellor, during which you may discuss the history of HD in your family, the genetics of HD, the reason that you're seeking testing at this point in time and potential impacts of a positive result
  • If you decide to go ahead you will then need to undergo a blood test 
  • Once your test results are ready another appointment will be scheduled to receive the outcome
  • Follow up counselling and support is recommended 

Please note that if you wish to have support through this process, Huntington's Victoria can attend these appointments with you.


Resources:

ACAH

Accredited by the Australian Council on Healthcare Standards until 15/07/2017

ACAH