TAND Consortium

The TAND consortium includes 26 members from 10 countries, representing all World Health Organization (WHO) regions. Members include a broad range of stakeholder groups (including family representatives, non-profit organisations, researchers, technology experts, clinicians, social scientists, statisticians) and bring highly interdisciplinary skills to the project (including child & adolescent psychiatry, paediatric neurology, clinical psychology, educational psychology, speech & 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-fertilization 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.

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Organogram

PI and co-PI

The consortium is led by Petrus de Vries (PI) and Anna Jansen (co-PI) who are responsible for the successful running and completion of the project. The PI and co-PI are also responsible for all aspects of project oversight, financial management, HR management and ethical conduct of the TANDem project.

Action Group

The Action Group includes Petrus de Vries, Anna Jansen, Liesbeth De Waele (dissemination lead), Tosca Heunis (project coordinator), and Stephanie Vanclooster (postdoctoral researcher). They are responsible for the day-to-day running of the project and for coordination between all groups in the project. The Action Group meets on a weekly basis to discuss project matters.

Steering Group

The Steering Group includes all members of the Action Group Chris Kingswood (family representative and representative of the Tuberous Sclerosis Association UK) and Shoba Srivastava (family representative and a founder member of Tuberous Sclerosis Alliance of India). The Steering Group is responsible for oversight of the activities in the TANDem project and, in particular, provide a forum to bring a user/carer voice to the project.

Technology Group and Technology Partner

The Technology Group is led by Tosca Heunis; this group includes Liesbeth De Waele, Chris Kingswood, Aubrey Kumm and Peter Davis. The Technology Group, in close collaboration with the app development company ITHands, is responsible for all aspects related to development of the TAND Toolkit app.

Cluster Groups

The Cluster Groups are led by Stephanie Vanclooster. Eight cluster groups were created to develop consensus guidelines for the assessment and treatment of TAND in TSC. Each cluster group has a lead, a co-lead, and 1–3 additional members, with at least one family representative. Each Cluster Group is responsible for conducting a literature review that focuses on the assessment and treatment of their assigned TAND cluster. These cluster chapters will form the basis of

  • individual chapters in a TAND (e-)book for families and practitioners,
  • a consensus clinical guideline manuscript for peer-reviewed publication, 
  • the generation of the consensus clinical guidelines toolkit to be built into the TAND Toolkit app.

Autism spectrum disorder-like cluster

Dysregulated behaviour cluster

Eat/sleep cluster

Mood/anxiety cluster

Neuropsychological cluster

Overactive/impulsive cluster

Scholastic cluster

Cluster group

Members

Autism spectrum disorder-like cluster

Dysregulated behaviour cluster

Eat/sleep cluster

Mood/anxiety cluster

Neuropsychological cluster

Overactive/impulsive cluster

Scholastic cluster

Validation Group

The Validation Group is responsible for the validation of the app-based TAND-SQ Checklist (a self-report, quantified version of the TAND-L Checklist) against expert clinical data. It includes the Steering Group along with Mustafa Sahin, Peter Davis, Darcy Krueger, Jamie Capal, and representatives from the three validation sites at Boston Children’s Hospital, Cincinnatti Children’s Hospital, and the TSAlliance.

Emerging Researchers Group

Given that research mentoring and capacity building are goals of the TANDem project, a separate group was set up for self-identified emerging/early career researchers. This group is led by Stephanie Vanclooster. She is joined by Agnies van Eeghen, Peter Davis, Sebastián Cukier, Stacey Bissell, Tanjala Gipson, and Tosca Heunis. Their meetings are used as a forum to talk about career development, research and mentoring ideas.

Dissemination Group

This group is responsible for communication and dissemination of information about TAND and the TANDem project. It is led by Liesbeth De Waele and includes the Action Group and other consortium members (Agnies van Eeghen, Aubrey Kumm, Dena Hook, Jamie Capal, Katie Smith, Shoba Srivastava, Stacey Bissell, Sugnet Lubbe, and Tanjala Gipson).

Family Representatives Group

The TANDem project was fundamentally set up as a participatory project with multilevel stakeholders. For this reason, it was important to ensure that people with TSC and families who live with TSC have a clear and strong voice at all levels of the project. The Family Representatives Group therefore includes all TANDem members who have a lived experience with TSC: Chris Kingswood, Eva Schoeters, Jennifer Flinn, Katie Smith, Megumi Takei, Shoba Srivastava, and Vicky Whittemore. All of them wear multiple ‘hats’ as part of the project, either as scientists, educators, clinicians or as leaders in global nonprofit organisations. Family representatives are part of all other groups in the project to ensure the project will deliver direct benefits to the TSC community.