biostudies-literatureEbrahimi-Fakhari DNovartis PharmaGerman Tuberous Sclerosis Foundation (Deutsche Tuberöse Sklerose Stiftung)117https://www.ebi.ac.uk/biostudies/studies/S-EPMC6050673biostudies-literatureUnknown13(1)<h4>Background</h4>Tuberous Sclerosis Complex (TSC) is a rare multisystem disorder. In 2012 diagnostic criteria for TSC were revised. However, data on the incidence of TSC are limited.<h4>Methods</h4>Prospective, national surveillance study in Germany over a 2-year-period (03/2015-02/2017) using current revised criteria for TSC. Patients up to the age of 18 years with a new diagnosis of definite or possible TSC (clinical and/or genetic) were included. The aims of this study were 1) to generate up-to-date data on the incidence of definite or possible TSC, 2) to assess age at first diagnosis, and 3) to compare these data with previous epidemiologic data.<h4>Results</h4>In total, 86 patients met inclusion criteria (definite or possible TSC) with a median age at diagnosis of 6 months (range: 5Orphanet journal of rare diseasesIncidence of tuberous sclerosis and age at first diagnosis: new data and emerging trends from a national, prospective surveillance study.PMC6050673PNR 05/15FPJ 0716Meyer SGraf NFlotats-Bastardas Mvon Kries REbrahimi-Fakhari DMann LLPoryo MGortner LZemlin MHeinrich BfalseIncidence of tuberous sclerosis and age at first diagnosis: new data and emerging trends from a national, prospective surveillance study.<h4>Background</h4>Tuberous Sclerosis Complex (TSC) is a rare multisystem disorder. In 2012 diagnostic criteria for TSC were revised. However, data on the incidence of TSC are limited.<h4>Methods</h4>Prospective, national surveillance study in Germany over a 2-year-period (03/2015-02/2017) using current revised criteria for TSC. Patients up to the age of 18 years with a new diagnosis of definite or possible TSC (clinical and/or genetic) were included. The aims of this study were 1) to generate up-to-date data on the incidence of definite or possible TSC, 2) to assess age at first diagnosis, and 3) to compare these data with previous epidemiologic data.<h4>Results</h4>In total, 86 patients met inclusion criteria (definite or possible TSC) with a median age at diagnosis of 6 months (range: 52018-01-01T00:00:00Z2018 Jul2025-04-05T13:13:52.479Z2019-03-26T23:47:08ZS-EPMC60506733001696710.1186/s13023-018-0870-y