The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Read the Article
A new open access paper in the Journal of the American Academy of Dermatology investigates fibrous cephalic plaques (FCPs) in individuals with TSC. The authors found that though clinicians typically look for FCPs on the forehead, roughly 60% of FCPs are found on the neck, scalp, or elsewhere on the face. Clinicians who find FCPs should recognize them as a potential sign of TSC and evaluate the patients further.
Do you use Mendeley to organize your citations? We have created a Mendeley group for all research articles on tuberous sclerosis complex and a smaller group for articles supported by TSC Alliance funding. Please join our groups and contribute to the project by adding citations and documents. This will help us create a resource for researchers in the field and show our donors the impact of TSC Alliance research funding.