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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Kind of data collected: All vs <strong>Treat</strong> <strong>NMD</strong><br />
ALL re g istrie s<br />
T re a t <strong>NMD</strong><br />
Answe r Op tio ns<br />
Re sp o nse<br />
Pe rce nt<br />
Re sp o nse<br />
Co unt<br />
Re sp o nse<br />
Pe rce nt<br />
Re sp o nse<br />
Co unt<br />
Anagraphical data<br />
32,3% 71 21,2% 7<br />
Diagnosis<br />
95,0% 209 93,9% 31<br />
Anthropometric information<br />
32,7% 72 24,2% 8<br />
Socio-demographic information<br />
48,2% 106 33,3% 11<br />
Genetic data<br />
72,3% 159 100,0% 33<br />
Clinical data<br />
86,8% 191 100,0% 33<br />
Medications, devices and health services<br />
61,4% 135 63,6% 21<br />
Patient-reported outcomes (e.g. quality of life data, Health 35,5% 78 33,3% 11<br />
Family history<br />
55,0% 121 75,8% 25<br />
Birth and reproductive history<br />
30,5% 67 33,3% 11<br />
Clinical research participation and bio-specimen donation 30,5% 67 36,4% 12<br />
Patient’s preferences for communication<br />
12,7% 28 27,3% 9<br />
Other (specify):<br />
12 2<br />
a nswe re d q ue stio n<br />
220 33<br />
skip p e d q ue stio n<br />
0 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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