Projects
Overview
The TAND consortium have completed work on the TANDem-1 project and are currently working on TANDem-2.
TANDem-1: Empowering families through technology
TSC-associated neuropsychiatric disorders (TAND) represent the number one concern to families around the globe, yet they are highly under-identified and under-treated – we refer to these as an ‘identification gap’ and a ‘treatment gap’. In 2012 we introduced the term ‘TAND’ and in 2015 we created the TAND Lifetime (TAND-L) Checklist to reduce the ‘identification gap’. Research using the TAND-L Checklist showed that we could identify seven natural TAND Clusters that may be useful to reduce both the identification and treatment gaps for TAND further.
TANDem-1 (the original TANDem project) grew out of participatory research with families and a range of TSC stakeholders who identified three important steps for action:
- Creation of a self-report and quantified version of the TAND-L Checklist.
- Creation of a digital tool such as an app for the TAND Checklist.
- Generation of evidence-based guidelines and a toolkit for next-step management of TAND Clusters.
The TANDem-1 project was a direct result of these requests from our TSC stakeholders, and had three aims:
- Aim 1: Development and validation of a quantified, self-report TAND Checklist (TAND-SQ), built as a mobile app.
- Aim 2: Generation of consensus clinical guidelines for identification and treatment of TAND Clusters, to be incorporated as a toolkit into the app.
- Aim 3: Establishment of a global TAND Consortium through a range of networking, capacity-building and public engagement activities.
Please click below to read more about the work completed in this project.
TANDem-2: Closing the gap to interventions for TAND
Through our work in the TANDem-1 project, we became aware of further gaps in the literature and research landscape that lead us to conceptualise the next project on TAND, TANDem-2: Closing the gap to interventions for TAND.
Following development and validation of the TAND-SQ Checklist, we realised that there is almost no information about the natural trajectory of the severity of TAND manifestations over time (except for some literature related to autism and social-communication development in TSC in very young children with TSC). No studies have examined the natural changes in severity or TAND features or TAND clusters over time and the newly developed TAND-SQ Checklist now offers a useful measure for doing so. We also realised that psychosocial wellbeing of caregivers of individuals with TSC (and how this may be related to TAND severity), has not been adequately studied. Finally, we realised that there are no intervention studies reported that aim to help improve the psychosocial wellbeing of caregivers. These then became the aims of the TANDem-2 project. You can read more about TANDem-2 by clicking on the button below.
