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.
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.
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.
The TAND consortium was well represented at the annual International Society for Autism Research (INSAR) conference, held in Seattle, USA, 30 April – 3 May 2025. Two posters were presented, highlighting exciting developments in the global effort to close the identification and treatment gap for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND).
We are very excited to announce the publication of the authorised Chinese versions of the TAND-L Checklist! Two versions – a Traditional Chinese and Simplified Chinese TAND-L Checklist – are now available on the TAND Consortium website.
The TAND consortium was well represented at the annual International Society for Autism Research (INSAR) conference, held in Seattle, USA, 30 April – 3 May 2025. Two posters were presented, highlighting exciting developments in the global effort to close the identification and treatment gap for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND).
We are very excited to announce the publication of the authorised Chinese versions of the TAND-L Checklist! Two versions – a Traditional Chinese and Simplified Chinese TAND-L Checklist – are now available on the TAND Consortium website.
The TAND consortium was well represented at the annual International Society for Autism Research (INSAR) conference, held in Seattle, USA, 30 April – 3 May 2025. Two posters were presented, highlighting exciting developments in the global effort to close the identification and treatment gap for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND).
We are very excited to announce the publication of the authorised Chinese versions of the TAND-L Checklist! Two versions – a Traditional Chinese and Simplified Chinese TAND-L Checklist – are now available on the TAND Consortium website.
The TAND consortium met together in Antwerp, Belgium for the multidisciplinary TANDem-2 Project Planning Workshop from 2 – 5 November 2024. The goal of this meeting was to adopt a participatory research approach to plan and prepare for the TANDem-2 project: ‘Closing the Gap to Interventions for TAND’.
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