TAND Toolkit
Welcome
Welcome to the TAND toolkit! TAND are Tuberous Sclerosis Complex (TSC) Associated Neuropsychiatric Disorders. TAND consist of a range of behavioural, psychiatric, scholastic, neuropsychological, and psychosocial difficulties commonly seen in people with TSC, in addition to the physical challenges, and often have the greatest impact on family stress and quality of life. You can find out more about TAND by clicking here.
The TAND toolkit was developed by the TAND consortium, a team of lived and professional experts from across the globe, in response to requests from individuals with TSC and their caregivers. It is designed around the seven natural TAND clusters identified by researchers to help families prioritise their goals. The tips and strategies are based on detailed evidence reviews both within the field of TSC and fields outside TSC relevant to the TAND clusters, for example, the autism literature. The toolkit is designed to help you prioritise and plan your next steps for assessment, intervention and support. More information on what this toolkit contains can be found in the video below.
The TAND toolkit is based on the seven TAND clusters that can be identified at the end of the paper version of the TAND-SQ Checklist or generated via the TAND Toolkit app. Information on wellbeing and quality of life and the impact of TAND on self-esteem and family relationships can be found in the eighth ‘wraparound’ psychosocial cluster.
For each of the eight TAND clusters, we have developed consensus clinical recommendations for assessment and intervention. A summary of these recommendations can be found in the ‘More about’ box in the resource panel on the right, and in the resource panels of each cluster. Based on these recommendations, in this toolkit you will find a collection of supports you can seek from others (‘What to seek’), such as clinical or diagnostic evaluations and clinician-delivered interventions. We have also developed a set of supports you may be able to implement for yourself or loved one (‘What to do’) in conjunction with a professional’s help, or even on your own.
Click on ‘View TAND clusters’ below to discover more.
Resource panel
More about
The TAND-SQ Checklist
[pedneur.com]
Find a TSC Organisation
[tscinternational.org]
You can also reach out to a TSC organisation in your country for further support, the Tuberous Sclerosis Complex International (TSCi) link in the resource panel can help you find a TSC organisation near you.
