
Join TANDem-2: the TAND Toolkit App is now live!
We are delighted to announce that the TANDem-2 project is open for participants to register on the TAND Toolkit App and begin tracking TAND over time!

We are delighted to announce that the TANDem-2 project is open for participants to register on the TAND Toolkit App and begin tracking TAND over time!

The TAND consortium is pleased to invite abstract submissions for the third online TAND Mini-Symposium, to be held online on 7 May 2026 from 14:00 to 17:00 CET. Abstract submission opens on 9 March 2026 and closes on 10 April 2026.

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.

The TSC Conference was a warm, informative and hopeful event which brought families, clinicians and researchers together for two lively days of learning and connection at Trinity College Dublin, Ireland, 31 October – 1 November 2025.

We are delighted to announce that the LATAM Spanish version of the TAND-SQ is now available on the TAND consortium website!

We are delighted to announce that the German version of the TAND-SQ is now available on the TAND consortium website!

We are delighted to announce that the Polish version of the TAND-SQ is now available on the TAND consortium website!

The TAND consortium participated in the 27th International Research Symposium of the Society for the Study of Behavioural Phenotypes (SSBP). The meeting took place in Amsterdam, The Netherlands from 4-6 September 2025. The conference focused on personalised care for rare genetic disorders.

Lucas Gutiérrez Lafrentz, a PhD researcher in the TANDem-2 project, participated in the International Summer Course in Qualitative Healthcare Research at the University of Antwerp during the last week of August, 2025.

Numerous members of the TAND consortium recently took part in the 2025 TSC International Research Conference in the Bethesda, USA from 26 to 28 June 2025.

We are excited to announce the recent publication of a protocol paper for the EpiCom (Epilepsy Comorbidities) study, a multicenter, open-label, phase 3b/4 study, designed in collaboration with patient advisory groups and healthcare professionals. The study is investigating the impact of adjunctive cannabidiol (CBD) treatment on TAND in individuals with TSC-associated seizures.

A study exploring the validation of the TAND-SQ scores was recently published in the Orphanet Journal of Rare Diseases.

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’.

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.

Welcome to the final report on the TANDem project. In this report we will summarise key activities, achievements and celebrations from year 4 of the project and present some overall reflections on our journey with the TANDem project.

The TAND consortium set out to develop a set of international consensus recommendations for the identification and treatment of TAND. These focus on the seven natural TAND clusters (Autism-like, Dysregulated behaviour, Eat/Sleep, Mood/Anxiety, Overactive/Impulsive, Neuropsychological, and Scholastic clusters), and an eighth wraparound Psychosocial cluster.

We are delighted to announce that the new checklist, the TAND-SQ, has been developed and is now published in the journal of Pediatric Neurology. The full checklist can be accessed via the article and can be used freely by families and individuals living with TSC.

Thank you to all our presenters who made the 2023 TAND Mini-Symposium such a great success! We had approximately 80 participants attend the event and engage in fruitful discussions about a wide range of presentations on TAND topics. Read further for access to the abstracts and recording of the event.
On TSC Global Awareness Day (15 May) we celebrate the power of research in partnership with TSC families. Watch this short movie to learn more about the TANDem project.

An international group of experts in the TAND consortium met with local families, clinicians and researchers to present up-to-date information on TSC, TAND, the TANDem project, and discussed issues of local interest to participants in round-table discussions.

In this report we present key milestones over the last year and highlight some important and exciting activities and achievements by the TAND consortium during this period. It was exactly 10 years ago, in 2012, that the term ‘TAND’ (TSC-Associated Neuropsychiatric Disorders) was coined at an international consensus conference in the USA.

The TAND consortium hosted an online Mini-Symposium in April 2022. Emerging and established TAND researchers across the globe were invited to submit abstracts for short ‘rapid fire’ presentations on their research.

The annual report 2021 documents the progress that has been made in the second year of the TANDem project in the context of COVID-19, illustrating the remarkable resilience and ongoing commitment of the TAND Consortium members to the project and its greater goals.

The TANDem consortium presented an abstract at the 24th World Congress of the International Association of Child & Adolescent Psychiatrists and Allied Professions (IACAPAP) organized virtually in December 2020.

An update on the TANDem project was presented at the annual DCAP (Division of Child and Adolescent Psychiatry) research mini-symposium virtually held on 27th November 2020.

At the International TSC Research Symposium organized virtually on 13th November 2020 an update was given on the first year of the TANDem project.

On 9-11 November 2020 a virtual TAND consortium consensus meeting took place to look back on all the work done in the first year of the project, and to set the goals and focus for the next year.

The first annual report documents the very hard work that has been done in year 1 to get the TANDem project going, encouraged by the dedication and hard work of all TANDem Consortium members, and by the ongoing support and enthusiasm for the project from the global TSC community.

The TANDem project had a launch meeting in November 2019 which took place at the Katholieke Universiteit Leuven (KUL) from 17–19 November 2019. The meeting was coordinated by Stephanie Vanclooster and hosted by Liesbeth De Waele.

We were delighted to present our TANDem poster at the 22nd Society for the Study of Behavioural Phenotypes (SSBP) International Research Symposium in Birmingham, UK.
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