Patient Reported Outcomes

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Information for Patients


TSC Biosample Repository and Natural History Database and Self-Report Portal

The TSC Biosample Repository stores samples of blood, DNA, and tissues scientists can use in their research. The samples we collect are all linked to clinical data in the TSC Natural History Database. Implemented in 2006, the TSC Natural History Database captures clinical data to document the impact of the disease on a person’s health over his or her lifetime. More than 2,000 people with TSC are enrolled in the Natural History database and more than 800 people have contributed biosamples.
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The TSC Alliance has also created a Self-Report Portal to collect information from people with TSC called Patient-Reported Outcomes (PROs). PROs are any report of the status of a person’s health condition that comes directly from the person, without interpretation of the person’s response by a clinician or anyone else.
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Quick Facts about TSC

Tuberous sclerosis complex (TSC) causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin and lungs.

TSC can cause complications in the lungs called lymphangioleiomyomatosis (LAM), which can severely compromise the lung’s ability to supply oxygen to the body. Women with TSC stand the greatest risk for LAM. 

TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder.


Patient Voices Vol 11th Edition Diagnostic Odyssey: Difficult Journeys to Diagnosis


ATS Patient Information Series

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM ( The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one’s personal health care provider.