TSC Research Round Up July 2020

In this issue of Research Round Up we have included two very different research reports which we hope will be of interest to our TSC Community; Improving developmental abilities in infants with TSC and Multidisciplinary model of care for TSC adults in France.

Improving developmental abilities in infants with TSC

This is a report on a small pilot study of an evidence-based, parent-mediated behavioral intervention focused on improving early social communication and play skills in five children with TSC, aged 1–3 years.    Background  This team’s previous study published in 2014, found that infants with TSC demonstrated early delays in nonverbal cognition and … Read More

Clinical trial of topical rapamycin (sirolimus) for facial angiofibromas – some interstate travel funding available

Dr Kate Riney and the team at Queensland Children’s Hospital are currently recruiting patients for a formal phase II/III trial of topical rapamycin (sirolimus) for facial angiofibromas.  Some funding for interstate travel is available, making this trial available for eligible … Read More

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