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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Aims of the registry: ALL registries vs <strong>Treat</strong> <strong>NMD</strong><br />
Answe r Op tio ns<br />
Epidemiological research<br />
Clinical research (patient<br />
Natural history of the disease<br />
Disease surveillance<br />
Genotype-phenotype correlation<br />
<strong>Treat</strong>ment evaluation (efficacy)<br />
Mutation database<br />
Healthcare Services planning<br />
<strong>Treat</strong>ment monitoring (safety)<br />
Social planning<br />
Other (specify):<br />
ALL<br />
T re a t <strong>NMD</strong><br />
Resp o nse Resp o nse Resp o nse Resp o nse<br />
Pe rce nt Co unt Pe rce nt Co unt<br />
70,8% 155 45,5% 15<br />
61,2% 134 84,8% 28<br />
60,7% 133 60,6% 20<br />
55,7% 122 33,3% 11<br />
53,4% 117 69,7% 23<br />
42,9% 94 24,2% 8<br />
42,9% 94 75,8% 25<br />
33,8% 74 33,3% 11<br />
33,3% 73 21,2% 7<br />
19,2% 42 18,2% 6<br />
a nswe re d q ue stio n<br />
skip p e d q ue stio n<br />
18 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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