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

Table 7 Polymyositis: data from Presidia in Tuscany

Single presidium RTMR data								All presidia RTMR data			Single presidium%
Presidium (Healthcare Company-Department/Un It)		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
Presidium 1	Immunoallergology	28	24	17	88	8	15	231	118	314	7.3	6.7	4.7
Presidium 1	Immunology	29	11	25	96	10	22	231	113	314	10.8	8.4	7.0
Presidium 1	Internal medicine	33	24	24	88	6	23	231	118	314	10.3	5.0	7.3
Presidium 1	Neurology 1	3	3	2	100	1	2	231	118	314	0.8	0.8	0.6
Presidium 1	Neurology 2	1	1	1	100	0	0	231	118	314	0.4	0.0	0.0
Presidium 1	Pneumology	4	3	4	75	0	0	231	118	314	1.7	0.0	0.0
Presidium 1	Rheumatology	31	28	26	96	18	25	231	118	314	11.2	15.2	7.9
Presidium 2	Immunoallergology	32	26	23	83	24	44	231	118	314	9.9	20.3	14.0
Presidium 2	Neurology and neurophysiopatology	57	47	36	83	0	3	231	118	314	15.5	0.0	0.9
Presidium 2	Neurology (university)	4	4	2	100	2	0	231	118	314	0.8	1.6	0.0
Presidium 2	Rheumatology	122	93	56	77	39	140	231	118	314	24.2	33.0	44.5
Presidium 3	Neurology and neurometabolic diseases	6	3	3	33	2	0	231	118	314	1.2	1.6	0.0
Presidium 3	Neurology and neurophysiopatology	6	5	5	80	0	0	231	118	314	2.1	0.0	0.0
Presidium 3	Rheumatology	19	10	12	58	5	15	231	118	314	5.1	4.2	4.7

In the table only most relevant Presidia for Kallman syndrome are shown. Inactive Presidia at the moment of data analysis have been omitted
FD first diagnosis, CONT follow-up visit, CERT certifications, TP treatment

ISSN: 1750-1172