Nine out of 10 people living with TSC experience TSC-associated neuropsychiatric disorders (TAND), such as autism, ADHD, aggression, depression, anxiety and sleep disorders. TAND disorders can have a serious impact on family life, with the number one request from individuals and families affected by TSC being 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.
The King Baudouin Foundation is an independent international foundation which aims to change society for the better by investing in inspiring projects and individuals. 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.
Prof de Vries and Prof Anna Jansen with Princess Astrid of Belgium, Honorary President of the King Baudoin Foundation. With them, a representative of the Fund Charles-Dubuisson that provided funding for the TANDem project.
Professor de Vries commented: “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. Further information on TAND can be found by watching our films from the Belfast TAND conference in January.