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Revised Huntington's Disease
Presymptomatic Testing Protocol

The Huntington Disease presymptomatic testing protocol (HDPT) adopted in 1994 by the Central Regional Genetic Services was based on international guidelines and included pretest psychiatric and neurological evaluations and genetic counselling. Several surveys from around the world have evaluated the short and long-term effects of HDPT and found that, although the emotional impact of testing was significant, very few "catastrophic events" (e.g. suicide) have occurred as a result. In other words, after a period of adjustment, most people cope with testing and their results.

Alison Gray’s study evaluated levels of satisfaction with our protocol strongly suggested that people do not cope well with the lengthy waiting period between their initial meeting with genetic services and receiving their results. As a result of this feedback and to streamline the process, the protocol has been revised.

(The following pre-symptomatic protocol applies to Central and regional genetic services only.)

1. Discussion with the Medical Geneticist or Genetic Counsellor. Psychiatric and neurological appointments offered (optional). Contact numbers for the HD Association offered.

2. Stand-down period of 4 weeks to consider pros and cons of testing, then contact genetic services to arrange for consent and blood forms.
3. Written consent and blood sample obtained.

4. DNA extracted and the sample sent to the Auckland laboratory for testing.

5. Result session with a health professional, typically Medical Geneticist, Genetic Counsellor, Psychiatrist or GP. If the result is ‘positive’ for the presence of the HD mutation a neurological evaluation will be offered.

6. Follow-up in person, by telephone or letter as appropriate.

It is hoped that the protocol will ensure that people receive their results within three months of their meeting with a genetic service.

Comments are very welcome. Please address them to:-

Central Regional Genetic Services,
Wellington Hospital,
PO Box 7902,
Wellington South.

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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
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