Tuberous Sclerosis Practice Survey
The aim of this quality improvement survey is to enhance care delivery in children with Tuberous Sclerosis Complex (TSC) across Canada. We want to learn more about models of care in TSC in Canada, and to identify gaps. In addition, we hope to establish a community of practice in TSC care that will engage in supporting other providers in clinical and scholarly activities.
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What is your domain of practice?
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 What is your primary area of specialty?
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Are you a pediatric or adult care provider?
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What is your primary practice setting?
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How many years in practice?
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Province in which you practice (primary location of practice)
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Do you have a dedicated Tuberous Sclerosis Clinic (TSC)?  
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If yes, do you believe that the dedicated clinic has enhanced TSC care delivery?  
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How many patients with diagnosis of TSC do you follow?
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Do you follow 2012 International TSC Guidelines  in your practice? (https://www.pedneur.com/article/S0887-8994(13)00491-8/pdf. )
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If you do not follow the guidelines, are you aware of the 2012 International TSC Guidelines?
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Do you get referrals and counsel regarding prenatal TSC diagnosis?
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If you do not participate in counselling regarding prenatal TSC diagnosis, who is involved with these patients at your centre (i.e. geneticist, genetic counselor, neonatal neurologist etc)?
Do you regularly obtain genetic testing for TSC?
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Do you see patients that do not meet the diagnostic criteria for TSC and need to followed long term to reassess diagnosis?
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Do you do screening EEGs on infants who are newly diagnosed with TSC?
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If yes, how often do you do screening EEGs:
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Do you initiate preventative treatment with anti-seizure medication in infants with TSC who have an abnormal EEG in absence of clinical seizures (i.e. presymptomatic treatment)?
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If yes, which anti-seizure medication  do you prescribe most commonly?
How long do you continue pre-symptomatic treatment for ?
Do you feel comfortable prescribing mTORi (mTOR inhibitors) to treat SEGAs?
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Who prescribes (mTOR inhibitors) mTORi for treatment of SEGAs in your centre?
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Who prescribes (mTOR inhibitors) mTORi for treatment of angiomyolipomas (AMLs) in your centre?
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Are you using mTORi to primarily treat intractable seizures in TSC?
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Do you feel comfortable prescribing mTORi to treat seizures in TSC?
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If you are not comfortable, please describe why
If you received additional training/support would you feel more comfortable using mTORi for treating the various manifestations of TSC including seizures?
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In patients with medically refractory epilepsy and TSC, which of the following interventions would you use to treat epilepsy (choose all that apply)?
Does your centre perform epilepsy surgery on children with TSC?
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Is there an adult TSC expert in your area?
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What are the main barriers to treating your patients with TSC (check all that apply)
Additional comments to the main barriers to treating your patients with TSC
If are interested in being part of future Canadian TSC network or have any questions, please email us at                                                              
OntarioTsc@gmail.com 
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