TSC Alert

Archive for May, 2020

New Clinical Trial Finder Tool

The TSC 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. Are you conducting a study involving patients with TSC that isn’t listed in the online tool? Contact Zoë Fuchs, TSC Alliance Science Project Coordinator, at zfuchs@tscalliance.org.

TSC Alliance Partners with NeurologyLive™

The TSC 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. Subscribe

TSC Biosamples Available at No Cost to Researchers

Although COVID-19 is delaying many aspects of academic research, the TSC 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 so samples may be shipped as soon as is permissible by your institution. Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases, we can ship these samples at no charge to the investigator. To date, we have shipped…

Update on TSC Biosample Repository Project

Currently, biosample collections have been paused. However, patients with TSC can still participate in this initiative. The TSC Alliance is able to consent patients for the project via a 20-minute phone call so when biosample collection is available, we can proceed smoothly and quickly. If you see patients who may be interested in participating in this project please download and share our study flyer. Learn More

DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available

The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2020 grant cycle. Three award mechanisms are available this year: Exploration – Hypothesis Development Award (up to $150,000 in direct costs over two years) Idea Development Award (up to $450,000 in direct costs over three years) Clinical Translational Research Award (up to $600,000 in direct costs over three years) The deadline to submit a Pre-Application Letter of Intent is June 18, 2020 at 5 pm Eastern. A brief summary of the three award mechanisms and submission requirements can be found here. The TSCRP is part of the Congressionally Directed Medical Research Programs (CDMRPs) at the…

ATS ASPIRE Program Applications Due June 15

The American Thoracic Society and participating institutions have developed the ATS ASPIRE Program, a cross-institutional, academic sleep pulmonary fellowship program designed to train pulmonary/sleep physician-scientists and the next generation of pulmonary/sleep leaders. About the ASPIRE Program Accepted fellows are given an annual grant ($10,000 during their research years and $3,000 during their clinical years) to be used for conferences, courses, or research endeavors. Research mentorship will be shared between the six participating medical centers, which include the University of Pennsylvania, Johns Hopkins University, University of Pittsburgh, Harvard University, Case Western Reserve University School of Medicine, and UC San Diego Health System….

Research Study on TSC and COVID-19

The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The TSC Alliance is collecting clinical information in their TSC Natural History Database about individuals with TSC who had COVID-19 infection. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and other TSC conditions affect the risk of getting COVID-19 and its severity. If you or your loved one with TSC had COVID-19 confirmed by testing, please consider participating in the TSC Alliance TSC Natural History Database. To get…

COVID-19 Considerations for TSC Medical Professionals

  |  News

Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC 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. Download Physician Recommendations The TSC Alliance also developed a letter template physicians can use for their patients who are having trouble with their insurers paying for 90-day supply of their medications….