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International neuropsychiatric disorders research project awarded funding by King Baudouin Foundation and Tuberous Sclerosis Association

Posted in Neurology News on 9th Apr 2019

A major worldwide project to help researchers and clinicians better understand and treat neuropsychiatric disorders of Tuberous Sclerosis Complex (TSC) patients has been awarded funding. Co-funded by the King Baudouin Foundation and the Tuberous Sclerosis Association, the project marks a significant milestone in improving the lives of people living with TSC.

TSC is a rare genetic condition affecting 1 in 6,000 people that can lead to non-cancerous (benign) growths in various organs of the body, with these growths often causing problems because of their size and location. Physical symptoms of TSC are often diagnosed and managed from a young age, but TSC-associated neuropsychiatric disorders (TAND) – such as autism, ADHD, aggression, depression, anxiety and sleep disorders – are less likely to be diagnosed, monitored and treated.

Nine out of 10 people living with TSC experience TAND disorders which can have a serious impact on family life. The number one request for help from individuals and families affected by TSC is for advice and support to help them manage TAND-related symptoms. However, despite calls for a greater clinical focus on TAND, there has been little evidence-based advice available to help.

The TANDem Project will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND.

Funding for the TANDem Project was awarded to the project co-leads Professor Petrus de Vries (University of Cape Town) and Professor Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) at a King Baudouin Foundation awards ceremony on Thursday 4 April 2019. Professor de Vries commented:

This really was the logical next step in our TAND research journey, so I was extremely pleased that the Dr & Mrs Charles Tournay-Dubuisson Fund awarded this grant to us. Development of a TAND app was the vision of Dr Loren Leclezio, who really led research on the TAND Checklist until her untimely death in 2018. I think it is a perfect legacy for Loren’s inspiring work and I am really grateful for it!

“Needless to say, projects like this can only happen with teamwork. We have a wonderful network of families, TSC organisations, academics and clinicians who are all passionate about TAND and who all understand the urgent need for impactful TAND research. I really believe this project has the potential to change the global landscape of TAND research.”

Professor Jansen highlighted the importance of the TANDem Project:

TAND was the top research priority identified as part of the Priority-setting Partnership in TSC, organised by the King Baudouin Foundation. Empowering families around the globe to improve diagnosis and treatment of TAND and alleviate its burden is the ultimate mission of this project.”

Louise Fish, Chief Executive of the Tuberous Sclerosis Association (TSA), commented: “Individuals and families affected by TSC have been calling for a greater clinical focus on TAND and we are therefore delighted to be co-funding this milestone project of international importance. The development of an app is a practical project which will have a tangible impact on the day-to-day lives of individuals and families affected by TSC. Co-funding the TANDem Project, alongside the King Baudouin Foundation, demonstrates the TSA’s focus on driving research that improves the lives of people living with TSC.”

The TANDem Project will commence worldwide during the second half of 2019.