Project

Empowering families through technology: a mobile-health project to reduce the TAND identification and treatment gap (TANDem)

Goal: The TANDem project will design a smartphone application for patients with Tuberous Sclerosis Complex (TSC) and their families. This app will allow them to identify their own personal set of neuropsychiatric effects associated with this condition (TSC-Associated Neuropsychiatric Disorders or 'TAND'), and provide first-step advice on how to deal with these effects.

Updates
0 new
0
Recommendations
0 new
0
Followers
0 new
2
Reads
0 new
76

Project log

Anna Jansen
added a research item
Background Tuberous Sclerosis Complex (TSC), a multi-system genetic disorder, is associated with a wide range of TSC-Associated Neuropsychiatric Disorders (TAND). Individuals have apparently unique TAND profiles, challenging diagnosis, psycho-education, and intervention planning. We proposed that identification of natural TAND clusters could lead to personalized identification and treatment of TAND. Two small-scale studies showed cluster and factor analysis could identify clinically meaningful natural TAND clusters. Here we set out to identify definitive natural TAND clusters in a large, international dataset. Method Cross-sectional, anonymized TAND Checklist data of 453 individuals with TSC were collected from six international sites. Data-driven methods were used to identify natural TAND clusters. Mean squared contingency coefficients were calculated to produce a correlation matrix, and various cluster analyses and exploratory factor analysis were examined. Statistical robustness of clusters was evaluated with 1000-fold bootstrapping, and internal consistency calculated with Cronbach’s alpha. Results Ward’s method rendered seven natural TAND clusters with good robustness on bootstrapping. Cluster analysis showed significant convergence with an exploratory factor analysis solution, and, with the exception of one cluster, internal consistency of the emerging clusters was good to excellent. Clusters showed good clinical face validity. Conclusions Our findings identified a data-driven set of natural TAND clusters from within highly variable TAND Checklist data. The seven natural TAND clusters could be used to train families and professionals and to develop tailored approaches to identification and treatment of TAND. Natural TAND clusters may also have differential aetiological underpinnings and responses to molecular and other treatments.
Stephanie Vanclooster
added a project goal
The TANDem project will design a smartphone application for patients with Tuberous Sclerosis Complex (TSC) and their families. This app will allow them to identify their own personal set of neuropsychiatric effects associated with this condition (TSC-Associated Neuropsychiatric Disorders or 'TAND'), and provide first-step advice on how to deal with these effects.