TSC Alert

Archive for April, 2020

New Clinical Trial Finder Tool

The TS Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials. You can find the tool on our website here.

Contribute to a Study About Standard Neurological Care in TSC Children

Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic behavior with significant impact on the daily life of families with this condition. We are currently conducting an inquiry study about a worldwide standard practice of neurological care of children with TSC and we would like to invite you to take part in this study. The aim of this project is to explore current standards of neurological care for children with TSC considering epilepsy diagnosis and management in the leading…

TS Alliance Partners with NeurologyLive™

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The Tuberous Sclerosis Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news, FDA updates and more.

TSC Biosamples Available at No Cost to Researchers

Although COVID-19 is delaying many aspects of academic research, the TS Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed. We can review and approve your applications for biosample use in advance such that samples may be shipped as soon as is permissible by your institution.

Reminder: Research Grant LOIs Due April 27

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The TS Alliance has extended the deadline to submit letters of intent for Postdoctoral Fellowships and Early Stage Investigator Research Grants. Learn more about our funding mechanisms and eligibility requirements on our Grants page. Letters of reference are required for Postdoctoral Fellowships, so please begin the LOI process early to ensure your references have time to prepare and submit their letters. Please submit your LOIs through proposalCENTRAL by Monday, April 27 at 11:59 pm Eastern Time.

COVID-19 Considerations for TSC Medical Professionals

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Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TS Alliance’s Science and Medical Committee offers some general considerations for how to answer questions from TSC patients about COVID-19 and how to provide individualized care for TSC patients during the COVID-19 pandemic based on the information available to date in the publication listed below.