The Tuscany Regional Network for rare diseases: from European Reference Networks’ experience to registry based organisation and management model for rare diseases

Table 2 Dataset, data registered in RTMR

Single presidium RTMR data							All presidia RTMR data			Single presidum (%)
Presidium (Healthcare Company—Department—Unit)	Tot CASES from 2000 (FD OR CONT)	Residents	Tot CASES from 2014 (FD OR CONT)	Residents	Tot CERT from 27/5/17	Tot TP from 27/5/17	Tot CASES	Tot CERT	Tot TP	% CASES	% CERT	% TP	Calculation notes

RTMR = Registro Toscano Malattie Rare (Rare Diseases Registry of Tuscany), FD first diagnosis, CONT follow-up visit, CERT certification, TP treatment plan

ISSN: 1750-1172