Intended Study on Huntington’s Disease

The aim of the study is to look at the performance of people with diagnosed HD on a learning/memory task compared to people who are undergoing predictive testing for HD and a group of people who do not have the disease. It will be part of an ongoing study of HD conducted by Kristy Castiglione for her doctoral thesis at Victoria University of Wellington.

Research thus far has been relatively inconclusive regarding the exact nature of some of the cognitive impairments involved in HD. It is hoped that the present study will contribute to the understanding of, and ongoing care of people with HD.

Participation in the study is entirely voluntary and will involve an interview, a full neuropsychological assessment (which is a battery of tasks looking at verbal and non-verbal skills), a short questionaire, and a learning task.

The main benefit to participants will be the full neuropsychological assessment. Neuropsychological assessment is often desired by neurologists and other caregivers to assist in care for patients but is often unavailable due to insufficient resources. Currently the waiting time for such assessment at the Wellington Hospital is 7 - 8 months. This type of assessment will also provide a baseline of cognitive functioning for each patient providing the patient and their caregivers with a clearer and more detailed picture of the progression of the disease and the implications of each patients’ particular deficits.

In addition, psychological and/or neuropsychological problems may be detected and addressed earlier allowing for treatment, education and a better understanding of the impact of the disease for all people involved (neurologists, physicians,psychologists, counsellors, social workers, etc).

Overall, the information gained from the study will result in a better understanding of the patterns of cognitive functioning and may contribute to improved management of the disease by refining the care and treatment each individual will receive.

The study has now received approval from the Wellington Ethics Committee of the Central Regional Health Authority and will begin in early July. If anyone is interested in participating in the study or if you have any questions regarding any aspects of the research please feel free to contact the researcher at the contact details below.

Kristy Castiglione, BA (Hons)

Psychology Department

Victoria University of Wellington

P O Box 600

Wellington

Tel: (04) 495 5233 ext, 8062

of Fax: ( 04 ) 496 5402

or email: Kristy.castiglione@vuw.ac.nz

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