EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD
EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD
EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD
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Data providers: ALL vs <strong>Treat</strong> <strong>NMD</strong><br />
Answe r Op tio ns<br />
Re sp o nse<br />
Pe rce nt<br />
Clinical units<br />
Clinical Genetic units<br />
Laboratories/central services (biochemistry, pathological<br />
services, genetic, Rx, etc)<br />
Hospital databases (Discharge registers)<br />
Patients and families<br />
Patients’ groups (associations/federations)<br />
Disability registers<br />
Mortality registers<br />
Birth registers<br />
Centres of expertise<br />
Other registers<br />
Other (specify):<br />
a nswe re d q ue stio n<br />
skip p e d q ue stio n<br />
ALL re g istrie s<br />
Re sp o nse<br />
Co unt<br />
Re sp o nse<br />
Pe rce nt<br />
T re a t <strong>NMD</strong><br />
Re sp o nse<br />
Co unt<br />
83,6% 183 69,7% 23<br />
43,8% 96 69,7% 23<br />
43,4% 95 39,4% 13<br />
31,1% 68 33,3% 11<br />
48,4% 106 69,7% 23<br />
21,9% 48 39,4% 13<br />
3,2% 7 0,0% 0<br />
12,8% 28 0,0% 0<br />
3,7% 8 0,0% 0<br />
30,6% 67 21,2% 7<br />
6,8% 15 0,0% 0<br />
15 1<br />
219 33<br />
1 1<br />
6th TREAT-<strong>NMD</strong> Curators’ & 5th TGDOC Meeting<br />
Saturday and Sunday, 29th-30th September 2012, Istanbul, Turkey
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