Empowering Families Through Technology: A Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem)

Empowering Families Through Technology: A Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem)

Introduction: Tuberous Sclerosis Complex (TSC) is a multi-system genetic disorder with various TSC-Associated Neuropsychiatric Disorders (TAND) that significantly impact the mental health and wellbeing of individuals with TSC and their caregivers. TAND represents the number one concern to families w...

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Bibliographic Details
Main Authors: Bissell, S. (Author), Byars, A.W (Author), Capal, J.K (Author), Chambers, N. (Author), Cukier, S. (Author), Davis, P.E (Author), de Vries, P.J (Author), De Waele, L. (Author), Flinn, J. (Author), Gardner-Lubbe, S. (Author), Gipson, T. (Author), Heunis, T.-M (Author), Jansen, A.C (Author), Kingswood, J.C (Author), Krueger, D.A (Author), Kumm, A.J (Author), Sahin, M. (Author), Schoeters, E. (Author), Smith, C. (Author), Srivastava, S. (Author), Takei, M. (Author), van Eeghen, A.M (Author), Vanclooster, S. (Author), Waltereit, R. (Author)
Format: Article
Language:English
Published: Frontiers Media S.A. 2022
Subjects:
act
Article
behavioural phenotypes
checklist
clinical evaluation
confidentiality
consensus
data analysis
data protection
data transfer
digital technology
empowerment
feasibility study
genetic disorder
health app
health care delivery
health care need
health insurance
human
information dissemination
information processing
information storage
informed consent
mental disease
pathophysiology
personalised medicine
phenotype
practice gap
practice guideline
privacy
rare diseases
sample size
scale up
self report
TAND checklist
TAND identification treatment gap
treatment outcome
treatment planning
TSC-associated neuropsychiatric disorders (TAND)
tuberous sclerosis complex
tuberous sclerosis complex associated neuropsychiatric disorder
validation process
World Health Organization
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