TSC Alert

Archive for December, 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. Are you conducting a study involving patients with TSC that is not 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. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA updates and more. Subscribe

Update on TSC Biosample Repository Project

The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC Alliance can collect blood samples from anyone in the United States with TSC. If you see patients who may be interested in participating in this project please download and share our study flyer. Learn More

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 passes. 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.

COVID-19 Considerations for TSC Medical Professionals

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UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/). The portal is a one-stop resource to help members of the public and doctors find information about different stages of COVID-19 illness, NIH-supported COVID-19 prevention and treatment clinical trials, and locations to donate plasma.  The website provides clear and easy-to-understand information for: People who have never had COVID-19 who may be interested in joining a vaccine or other prevention trial People who have COVID-19 and want to participate in a treatment clinical trial People who have…

Research Study on TSC and COVID-19

The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information in their TSC Natural History Database about individuals with TSC who were infected with COVID-19. TSC researchers will use 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…

Save the Date for the 2021 Virtual International TSC & LAM Research Conference

Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled October 28-30, 2021. The conference will focus on structured, collaborative discussions on groundbreaking topics, such as: What’s Next in Research: biomarkers, drug targets, genetics, gene therapy, and disease stratification Clinical Trials: improving personalized medicine and patient-centered study design Evidence-Based Medicine: learning healthcare system, clinical standards, and patient-reported outcomes In addition, the conference will provide a platform for early-career researchers to present, share, and network with senior investigators. More information on the conference, including how to register, will be available in early 2021.

Ashley Pounders, MSN, FNP-C Joins TSC Alliance as Director, Medical Affairs

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Ashley Pounders, MSN, FNP-C joined the TSC Alliance team on December 1 as our first Director, Medical Affairs. In this new position, Pounders will provide information and assistance to constituents needing help accessing clinical care and FDA-approved treatments. She will also lead development of a new online “TSC Navigator” tool to help individuals and families maneuver the intricate TSC healthcare system and proactively manage their care. In addition, Pounders will drive implementation of a “TSC Learning Healthcare System” over the next few years, working closely with TSC Clinic Directors, TSC Alliance staff and community partners. Learn More