The tuberous sclerosis complex (TSC) community is pivotal to advancing research. When you enroll in a clinical trial, share your medical data, donate biosamples or give voice to your lived experience with TSC, you are empowering researchers with the resources and information they need to gain a deeper understanding of this disease and develop new treatments.

Ways to participate

Read below to see all the ways you can impact TSC research.

TSC Natural History Database and Biosample Repository

The TSC Natural History Database collects clinical information from people with TSC and connects to our Biosample Repository. Researchers use this vast collection of data to answer questions and find patterns during the course of TSC over the lifespan, and its variability person to person.

Learn more about these projects and how you can enroll here.

Seizures and TSC: Your data matters!

The TSC Alliance has established a data sharing partnership with Seizure Tracker. Seizure Tracker allows users to log seizure occurrences and other epilepsy care events such as medications, diet, and more, all through your computer or phone. Users may elect to share their self-reported data from the Seizure Tracker application with the TSC Alliance for use by TSC researchers.

To learn more, please click here.

TSC clinical trials 

Choosing to participate in a clinical trial is an important personal decision.  It is often helpful to talk to a physician, family members, or friends about deciding to participate in a clinical trial.  The following frequently asked questions provide an overview of clinical trials.

For additional information, you can download “A basic introduction to clinical trials” informational brochure.

Find a TSC clinical trial using our custom TSC clinical trial search tool at trials.tscalliance.org.

Please note: The search tool works best with Chrome or Safari browsers.

Patient-focused drug development

The TSC Alliance sponsored a patient-focused drug development meeting (PFDD) with the FDA on June 21, 2017. The purpose of this meeting was for individuals affected by TSC and caregivers of dependent adults or children to communicate their perspectives on living with TSC to the FDA.

The TSC PFDD meeting was divided into two parts. The morning focused on input from parents of children with TSC who have experienced, or are at risk for developing, epilepsy. The afternoon focused on adults with TSC and/or LAM who have experienced, or are at risk for developing, angiomyolipomas or LAM. The TSC PFDD meeting was designed to communicate to FDA the impacts of TSC on individuals’ daily lives, what types of treatment benefits make the most impact on peoples’ lives, and individuals’ and caregivers’ perspectives on how well available therapies are working.

In late October 2017, the TSC Alliance submitted this meeting’s Voice of the Patient report to the FDA. This report provides a detailed summary of the patient testimony presented at the meeting and communicates needs and improvements patients want and hope to see in their daily lives.