The role of the TSC Alliance in advancing therapy development
TSA (Tuberous Sclerosis Australia) works collaboratively with all members of TSC International, including the TSC Alliance in the USA. We thank the TSC Alliance for all the work it does for people living with TSC around the world, not least in the field of research. The TSC Alliance has recently published a paper which discusses its role in advancing therapy development.
TSC Alliance’s Research Strategy
Finding a new treatment for any disease is a long and expensive process, and it can be even more challenging for a rare disease such as TSC (Tuberous Sclerosis Complex). To encourage research on TSC and speed up the process developing new treatments, the TSC Alliance in the USA established a research strategy based upon the priorities of people living with TSC. TSC community members best know how the disease negatively affects their lives. Equally importantly, the TSC community is a necessary partner for any researcher or company who wants to bring forward a potential new treatment.
The TSC Alliance awards research funding grants to individual researchers who are at early stages of their careers. They also collaborate with many researchers and health care providers, and with the TSC community, to build shared resources. These resources include data from medical records and biological samples, such as blood and tissue samples, which are shared with an almost unlimited number of researchers around the world for a wide range of projects related to TSC. TSC Alliance also collaborate in clinical trials, help researchers design trials that are both meaningful to the TSC community and not overly burdensome to participants.
This research strategy continues to be shaped by the needs and priorities of the TSC community, working toward a future where everyone affected by TSC can live their fullest lives.
Steven L Roberds, Zoë Fuchs , Elizabeth M Cassidy, Samantha Metzger, Ayat Abi , Ashley J Pounders, Dean J Aguiar , https://pubmed.ncbi.nlm.nih.gov/39070094/
Full paper available at: https://10.1177/26330040241265411
DISCLAIMER
This information is intended to provide some insights into recent TSC-related research. It is not intended to, and it should not, constitute medical or other advice. Readers are warned not to take any action without first seeking medical advice.