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.
About this study This study reports on 90 adults with TSC who attended Centre Hospitalier Universitaire de Bordeaux, between January 2000 and September 2018. Since 2015 this institution has been providing a multidisciplinary team approach to the care of adults with TSC. It does this through … Read More
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
Kidney health is a serious concern for many people living with TSC. Renal cysts and angiomyolipomas (AMLs) often develop. These can obliterate healthy renal tissue and cause bleeding as they grow, leading to chronic kidney disease or devastating bleeding complications. Approximately … Read More
Read TSA’s April 2020 Research Round-Up
Angiofibromas (AF) are found in a majority of individuals with TSC over 5 years of age. These small bumps are usually scattered on the face, especially on the nose and cheeks, and sometimes on the forehead, eyelids, and chin. Topical sirolimus … Read More
Seizures in tuberous sclerosis complex (TSC) commonly develop in the first year of life and they are often preceded by changes being evident on electroencephalogram (EEG). The onset of such seizures is particularly significant as it is thought that they … Read More
This excellent paper, which is well worth reading in its entirety, is written by an eminent team of TSC expert health professionals in the UK. It discusses the need to improve TSC management to ensure people with TSC have early … Read More
TSC Research Round Up is a new enewsletter from TSA in which we present summary reports of some of the latest TSC-related research from Australia and around the world that we believe may be of relevance and importance to our TSC community.
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