Welcome to the website of the TAND consortium.
The TAND consortium is a group of stakeholders in the Tuberous Sclerosis Complex (TSC) community brought together by Prof. Anna Jansen and Prof. Petrus de Vries to address important gaps in Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) research.
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.
The TAND consortium includes 35 members from 16 countries, representing most World Health Organization (WHO) regions. Members include a broad range of stakeholder groups including family representatives, non-profit family support organisations, researchers, technology experts, clinicians, social scientists, and statisticians. The consortium also brings together a diverse range of expertise including lived expertise, child and adolescent psychiatry, paediatric neurology, clinical psychology, educational psychology, speech and language therapy, special education, intellectual disability medicine, nephrology, biomedical engineering, biostatistics, veterinary sciences, behavioural sciences, neurosciences and digital technology expertise.
This collaboration between individuals with lived expertise and professional expertise leads to cross-fertilisation and new synergies between established and young TSC clinicians and researchers, professionals from outside the TSC community, and family representatives from different parts of the world. The global map below shows all members of the consortium and their geographical locations.
The TAND consortium was brought together to conduct research about TAND that empowers families and professionals. All our research is conducted with family representatives from the TSC community to ensure our research is responsive to family needs.
The second project (TANDem-2), which is currently running, aims to better understand how TAND severity changes over time, and what might predict these changes. We are particularly interested in how caregiver wellbeing plays a role in TAND severity and how to support caregiver wellbeing in a scalable way. We are using an updated version of the TAND Toolkit App for TANDem-2. We will provide more information soon on how individuals with TSC and/or their caregivers can enrol as research participants.
[Link to be released on 28 February 2026]
Our first project (TANDem-1) grew directly out of the TSC community’s requests for a technological solution for identifying and managing TAND. During the project, the consortium developed a self-report quantified TAND Checklist (the TAND-SQ) so that families and individuals could identify and quantify their own TAND profiles. The TAND-SQ was then built into a mobile app. The consortium also developed international consensus recommendations on TAND management and used these to develop an evidence-informed TAND toolkit. The toolkit contains information on what additional supports and services families and individuals can seek for their TAND profiles, and strategies they may be able to implement at home. The toolkit was then integrated into the app to form the TAND Toolkit App.
We are delighted to announce that the launch of the TAND Toolkit App as part of the TANDem-2 research study will take place on 28 February 2026 at 14:00 – 15:30 CET in honour of World Rare Disease Day.
We are excited to present a 2-page family-focused introduction to the published international consensus recommendations for the identification and treatment of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND)!
We are delighted to announce that the launch of the TAND Toolkit App as part of the TANDem-2 research study will take place on 28 February 2026 at 14:00 – 15:30 CET in honour of World Rare Disease Day.
We are pleased to announce the date of the online TAND Mini-Symposium 2026 on 7 May 2026 from 14h00 to 17h00 CET.
We are delighted to announce that the launch of the TAND Toolkit App as part of the TANDem-2 research study will take place on 28 February 2026 at 14:00 – 15:30 CET in honour of World Rare Disease Day.
We are excited to present a 2-page family-focused introduction to the published international consensus recommendations for the identification and treatment of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND)!
We are pleased to announce the date of the online TAND Mini-Symposium 2026 on 7 May 2026 from 14h00 to 17h00 CET.