TSC Alert

Archive for March, 2021

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™

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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

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…

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. 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.

Seeking Volunteers for a Study Evaluating Perspectives on the Return of Individual Research Data

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Are you interested in participating in research? The University of Rochester is studying the topic of sharing research information with research participants. Participants receive $40. You May Qualify If You Are A caregiver of an individual with a rare disease A clinician researcher A clinician An IRB representative A Sponsor or drug development company representative Participation Involves Completing a recorded zoom interview with a member of the study team. Interviews take 60-90 minutes. During the interview, you will be asked about your ideas and suggestions related to sharing research information with research participants. Interested? Call the study team at 585-276-3987 or…

New Peer-to-Peer Listserv for Healthcare Professionals

The TSC Alliance invites healthcare professionals affiliated with a TSC Clinic, TSC Center of Excellence, or University Medical Center to subscribe to our new private listserv: p2p@lists.tscalliance.org.  Its primary purpose is for members to pose TSC-related cases or questions to their peers for feedback. Members may also use the listserv to seek opportunities for collaboration on TSC-related projects. The listserv will be monitored to ensure it is being used for appropriate communications.

HRA Open User Guide for TSC Alliance Grant Awardees

HRA Open is a web-based service sponsored by the Health Research Alliance (HRA) that promotes open access by linking your award information with PubMed Central (PMC) so you can deposit peer-reviewed publications. It goes one step further by providing an additional space to upload and share other materials related to your project, including figures, datasets, preprints, presentations, and other research outputs. One of the benefits of being an awardee of a member of the HRA is access to HRA Open. Details about PMC and this partnership can be found here. To begin, follow the steps in this guide to create an HRA…