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. 

The 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. 

Sleep difficulties and severe aggression were very similar between children and adults. 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.

*genotype – the set of genes in our DNA which are responsible for a particular trait.

To read this paper about TAND and people with TSC please CLICK HERE.