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.
PI and co-PI
The consortium is led by the principal investigator Petrus de Vries and co-principal investigator Anna Jansen who are responsible for the successful running and completion of the project. They are also responsible for all aspects of project oversight, financial management, human resource management and ethical conduct of the TANDem project.
View profile page
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.
View profile page
The Steering Group includes all members of the Action Group as well as Chris Kingswood (family representative and representative of the Tuberous Sclerosis Association UK) and Shoba Srivastava (family representative and 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/caregiver voice to the project.
View profile page
Technology Group and Technology Partner
The Technology Group is led by the project coordinator, Tosca Heunis. The group includes Liesbeth De Waele, Chris Kingswood, Aubrey Kumm and Peter Davis. The Technology Group, in close collaboration with the app development company, is responsible for all aspects related to development of the TAND Toolkit App.
The Cluster Groups are overseen by the postdoctoral researcher, 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 additional members, with at least one family representative. Cluster Groups were responsible for conducting a literature review and drafting of a ‘cluster chapter’ that focused on the assessment and treatment of their assigned TAND cluster. These cluster chapters will form the basis of
- a book for families and practitioners (most comprehensive)
- consensus clinical recommendations for TAND (summary of chapters)
- a toolkit to be built into the TAND Toolkit App (practical and specific elements from the consensus recommendations).
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 and representatives from the three validation sites at Boston Children’s Hospital, Cincinnati Children’s Hospital, and the TSC Alliance.
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, Shoba Srivastava, Stacey Bissell, Tanjala Gipson and Tosca Heunis. Their meetings are used as a forum to talk about career development, research and mentoring ideas.
This group is responsible for communication and dissemination of information about TAND and the TANDem project. The project has a website (www.tandconsortium.org), YouTube Channel and Twitter account. This group is led by Liesbeth De Waele and includes the Action Group and various other consortium members (Agnies van Eeghen, Aubrey Kumm, 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, Megumi Takei, and Shoba Srivastava. Katie Smith, a global Tuberous Sclerosis International representative, is also part of this group. All of them wear multiple ‘hats’ as part of the project, either as scientists, educators, clinicians or as leaders in global non-profit organisations. Family representatives are part of all other groups in the project to ensure that the project will deliver direct benefits to the TSC community.