TSC research including Research Round Up – a quarterly summary of some of the most important TSC-related research from Australia and around the world.
GeneEQUAL is a new study in NSW looking at how we can provide inclusive genomic healthcare. The first step involves interviews with adults with intellectual disability about their experiences with genetic services, even if that happened when they were a … Read More
Congratulations and thanks to Clare Stuart, TSA’s former General Manager, for all her work on “Beyond the Guidelines: How We Can Improve Healthcare for People with Tuberous Sclerosis Complex from Around the World.” This paper, which has just been published, … Read More
Congratulations to the team involved in the first significant updates to the clinical consensus guidelines for the diagnosis, surveillance and management of tuberous sclerosis complex (TSC) since 2013. The new guidelines, which have just been published, take into account new … Read More
Congratulations to Dr Rebecca Mitchell at Royal Children’s Hospital in Melbourne for being a finalist in The University of Melbourne ‘3 Minute Thesis Competition’. Here’s a link to her video about her research into TSC and autism. https://vimeo.com/575196995
Here is the latest issue of Research Round Up for July 2021.
About this study This study describes the clinical and genetic characteristics, management and quality of life of adults with Tuberous Sclerosis Complex (TSC), who had been diagnosed in adulthood compared to those diagnosed in childhood. This Spanish study of 57 … Read More
Cardiac rhabdomoyomas and TSC Cardiac rhabdomyomas (CRs) are non-cancerous tumours in the heart. Both single and multiple CRs are a major diagnostic criteria for TSC, with the likelihood of TSC diagnosis varying depending on the number of CRs. Multiple CRs … Read More
Flinders University Medical School is conducting a research project into how TSC patients and their carers are impacted by the disease, and how the medical system can best help. See below for more information. If you think you’d like to … Read More
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
In this first Research Round Up for 2021 we are delighted to feature three significant studies which Australian-based researchers have undertaken. Read more now