Background:

Tuberous Sclerosis Complex (TSC) is a genetic disease, affecting 1:6,000, causing non cancerous tumours to grow throughout the body. It requires coordinated care from many specialists preferably in a centre/network of expertise which we do not have in The Republic of Ireland (ROI).

Research:

This audit, measured the baseline care of TSC patients against TSC international recommendations. It is part of a bigger study to inform the development of an internationally recognised standard of care for individuals with TSC in The ROI.

Potential Impact:

It will provide valuable information which can be used to improve TSC care and support the establishment of a TSC centre of expertise.