Welcome to the website of the TANDem project. TANDem is an international multi-disciplinary mobile-health project to empower families and individuals who live with Tuberous Sclerosis Complex (TSC) around the world.
TSC is a genetic disorder with many different manifestations and up to 2 million people around the world have the condition. People with TSC have many physical manifestations that are usually well recognised and treated. However, most people with TSC also have difficulties associated with their development, mental health and learning abilities. We call these difficulties “TSC-Associated Neuropsychiatric Disorders”, or “TAND”. Most people around the world have TAND manifestations, but very few ever receive support for these challenges.
In the TANDem project, we are doing three main things:
Developing and validating a self-report, quantified TAND Checklist (called the ‘TAND-SQ’) and building the checklist into a mobile ‘app’. This should help people to identify their own TAND profile of needs.
Developing consensus clinical guidelines for the identification and treatment of TAND, and building those into the app. This should give people a TAND toolkit of tips, advice and next step suggestions for their TAND needs.
Setting up a global TAND consortium that will include people with TSC, family members, clinicians and researchers. This will create a network to develop future TAND research and service developments, to train the next generation of TAND researchers, and to engage with the general public about TSC and TAND.
The TAND consortium set out to develop a set of international consensus recommendations for the identification and treatment of TAND. These focus on the seven natural TAND clusters (Autism-like, Dysregulated behaviour, Eat/Sleep, Mood/Anxiety, Overactive/Impulsive, Neuropsychological, and Scholastic clusters), and an eighth wraparound Psychosocial cluster.
We are delighted to announce that the new checklist, the TAND-SQ, has been developed and is now published in the journal of Pediatric Neurology. The full checklist can be accessed via the article and can be used freely by families and individuals living with TSC.
On 9-11 November 2020 a virtual TAND consortium consensus meeting took place to look back on all the work done in the first year of the project, and to set the goals and focus for the next year.
The TANDem project had a launch meeting in November 2019 which took place at the Katholieke Universiteit Leuven (KUL) from 17–19 November 2019. The meeting was coordinated by Stephanie Vanclooster and hosted by Liesbeth De Waele.
The TAND consortium set out to develop a set of international consensus recommendations for the identification and treatment of TAND. These focus on the seven natural TAND clusters (Autism-like, Dysregulated behaviour, Eat/Sleep, Mood/Anxiety, Overactive/Impulsive, Neuropsychological, and Scholastic clusters), and an eighth wraparound Psychosocial cluster.
We are delighted to announce that the new checklist, the TAND-SQ, has been developed and is now published in the journal of Pediatric Neurology. The full checklist can be accessed via the article and can be used freely by families and individuals living with TSC.
On TSC Global Awareness Day (15 May) we celebrate the power of research in partnership with TSC families. Watch this short movie to learn more about the TANDem project.
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