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.
To celebrate TSC Global Awareness Day (15 May), we would like to highlight all the activities of the TANDem project in this compilation of annual reports. We salute all the families who participated across the four years of the project. Thank you for your time and interest in the project – your participation ensured the successful completion of the TANDem project!
The TAND Consortium was represented recently at the International Child Neurology Congress in Cape Town from 7-10 May. Profs Anna Jansen, Petrus de Vries, Darcy Krueger and Dr Tosca-Marie Heunis all gave talks related to ‘Managing the complexities of TSC’.
To celebrate TSC Global Awareness Day (15 May), we would like to highlight all the activities of the TANDem project in this compilation of annual reports. We salute all the families who participated across the four years of the project. Thank you for your time and interest in the project – your participation ensured the successful completion of the TANDem project!
The TAND Consortium was represented recently at the International Child Neurology Congress in Cape Town from 7-10 May. Profs Anna Jansen, Petrus de Vries, Darcy Krueger and Dr Tosca-Marie Heunis all gave talks related to ‘Managing the complexities of TSC’.
To celebrate TSC Global Awareness Day (15 May), we would like to highlight all the activities of the TANDem project in this compilation of annual reports. We salute all the families who participated across the four years of the project. Thank you for your time and interest in the project – your participation ensured the successful completion of the TANDem project!
The TAND Consortium was represented recently at the International Child Neurology Congress in Cape Town from 7-10 May. Profs Anna Jansen, Petrus de Vries, Darcy Krueger and Dr Tosca-Marie Heunis all gave talks related to ‘Managing the complexities of TSC’.
One of our TAND consortium members, and recipient of TSA seed funding, Shoba Srivastava, recently presented a poster at the South African Association for Child and Adolescent Psychiatry and Allied Professions (SA-ACAPAP) conference in Stellenbosch, South Africa, on 7-9 March, 2024.
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