© 2009 Psychology Press, an imprint of the Taylor & Francis Group, an Informa business
http://www.psypress.com/jcen DOI: 10.1080/13803390903337878
JOURNAL OF CLINICAL AND EXPERIMENTAL NEUROPSYCHOLOGY
2010, 32 (6), 590–598
NCEN
A double blind evaluation of cognitive decline
in a Norwegian cohort of asymptomatic carriers
of Huntington’s disease
Cognition In asymptomatic huntington’S disease
Marleen R. van Walsem,
1
Kjetil Sundet,
2
Lars Retterstøl,
3
and Øyvind Sundseth
4
1
Oslo University Hospital, Rikshospitalet, Centre for Rare Disorders, Oslo, Norway
2
Institute of Psychology, University of Oslo, Oslo, Norway
3
Department of Medical Genetics, Oslo University Hospital, Ullevål, Norway
4
Department of Neuropsychology and Rehabilitation, Oslo University Hospital, Ullevål,
Norway
Previous studies investigating subclinical signs of cognitive decline in presymptomatic carriers of Huntington’s
disease (HD) have shown conflicting results. The current study examines cognition in 105 at-risk individuals,
using a broad neuropsychological test battery and adopting strict inclusion criteria for attaining a homogeneous
sample. Results obtained by analyses of variance and effect size calculations indicate no clinical evidence of
significant cognitive decline in asymptomatic HD carriers very far from onset of illness compared to noncarriers.
Closeness to disease onset amongst gene carriers influenced cognition negatively whereas cytosine–adenine–
guanine (CAG) repeat size did not. The findings call for longitudinal follow-up studies using a combination of
clinical instruments and experimental paradigms to pinpoint when subtle cognitive deficits occur and within
which of the cognitive domains.
Keywords: Huntington’s disease; Cognition; Asymptomatic; Cytosine–adenine–guanine; Proximity to disease onset.
INTRODUCTION
Huntington’s disease (HD) is an autosomal dominant
neurodegenerative disorder, which develops progressively
and with great variability in disease onset. The disease is
caused by a cytosine–adenine–guanine (CAG) repeat
expansion of the gene IT15 on the short arm of chromo-
some 4 (Gusella, Wexler, & Conneally, 1983; Huntington’s
Disease Collaborative Research Group, 1993). Healthy
individuals typically have a CAG repeat expansion vary-
ing from 6 to 27. A CAG repeat expansion of 36 or more
indicates a diagnosis of HD, while those individuals with
29–35 CAG repeats are unlikely to develop the disease
themselves; they do, however, give a small risk to their
children (Levin, Richie, & Jakupciak, 2006).
The onset and development of symptoms (motor,
cognitive and behavioral) are characterized by great
diversity as well as severity. This makes it difficult to
determine the start of clinical HD accurately. By conven-
tion, HD is diagnosed when an individual has a positive
family history of HD and unequivocal motor signs.
However, less distinctive symptoms such as behavioral
alterations and cognitive decline may appear earlier than
involuntary movements. Healthy individuals who are
gene carriers provide a unique opportunity to examine
the earliest signs and progression of HD. Insight into
subclinical signs of neurodegeneration will be critical for
the design of future clinical trials of prophylactic and
early treatment.
Investigations of asymptomatic gene carriers by
means of brain imaging techniques provide evidence for
physical changes in brain regions that are involved in
cognitive functions well before the onset of clinical HD.
For example, Ciarmiello et al. (2006) found significant
The authors would like to thank Olga Solberg and Kristin Eiklind for their help with obtaining and documenting the results of the
predictive test procedure and Jenny Keylock for her help in language editing. Preliminary results of this study were presented during
the Annual Plenary meeting of the European Huntington’s Disease Network (EHDN) 2009 in Lisbon, Portugal.
Address correspondence to Marleen R. van Walsem, Oslo University Hospital, Rikshospitalet, Centre for Rare Disorders, Oslo,
Norway (E-mail: marleen.walsem@rikshospitalet.no or marleenvanwalsem@yahoo.com).