Many thanks for checking and investigating It is a shame there s nothing more recent From p23 of Curatolo 2003 Diagnosic Criteria I get The rate of occurrence of tuberous sclerosis at birth is unknown paragraph continues with stats trying to come up with a figure This indicates that the real incidence at birth may be as high as 1 6000 Webb et al 1993 Cardiac rhabdomyomas and their association with tuberous sclerosis Arch Dis Child 68 367 70 Earlier when talking about Hunt and Lindenbaum s 1984 study he says The scientists believed that the birth prevalence might be even higher than it is now considered to be I don t have that paper so don t have more details An editorial by Fryer Journal of the Royal Society of Medicine 1991 84 699 says suggesting a birth incidence of 1 10000 I don t have the Osborne paper you mention I ve seen 1 5800 mentioned but don t know its source at present My sources seem to use incidence and prevalence interchangeably wrt to birth I m happy to change it if you think it may be less ambiguous The list of prevalence figures throughout the years comes from Curatolo 2003 Table 2 6 page 22 This in turn is based on an earlier table by Shepherd in his short chapter The Epidemiology of Tuberous Sclerosis Complex in the book Gomez 1999 The earlier table doesn t have the O Callaghan figure I ll see if I can get hold of some of the other papers but it isn t easy Talk