TSC-association neuropsychiatric disorders: findings from the TOSCA natural history study
This is a recently published paper about TAND in people
with TSC; authors include TSA trustees Chris Kingswood and Tom Carter as well
as TSA funded researchers and research committee members.
As there is very little information about TAND in adults
with TSC, this study looks at the data from the tuberous sclerosis registry to
increase disease awareness (TOSCA) natural history study – the largest natural
history study of TSC to date; to compare childhood and adult patters, age-based
patterns and to explore *genotype-TAND correlations in 2261 people with TSC.
The most common behavioural problems were overactivity,
sleep difficulties, impulsivity, anxiety, mood swings, severe aggression,
depressed mood, self-injury and obsessions. Autism spectrum disorder (ASD)
& attention deficit hyperactivity disorder (ADHD) were also reported.
rates of overactivity and impulsivity were considerably higher for children
with TSC than for adults with TSC, whilst rates of anxiety, mood swings,
depressed mood and obsessions were higher in adults than in children.
difficulties and severe aggression were very similar between children and
The results of this study highlight the extent of TAND in
TSC and emphasise that TAND remains underdiagnosed and potentially undertreated
in people with TSC. This is apparent due to the high rates of unreported or
missing TAND data in this study.