The ethical framework for performing research with rare inherited neurometabolic disease patients.

The need for performing clinical trials to develop well-studied and appropriate medicines for inherited neurometabolic disease patients faces ethical concerns mainly raising from four aspects: the diseases are rare; include young and very young patients; the neurological impairment may compromise th...

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Publicado en:	European Journal of Pediatrics Vol. 176; no. 3; pp. 395 - 406
Autores principales:	Giannuzzi, Viviana, Devlieger, Hugo, Margari, Lucia, Odlind, Viveca, Ragab, Lamis, Bellettato, Cinzia, D'Avanzo, Francesca, Lampe, Christina, Cassis, Linda, Cortès-Saladelafont, Elisenda, Cazorla, Ángels, Barić, Ivo, Cvitanović-Šojat, Ljerka, Fumić, Ksenija, Dali, Christine, Bartoloni, Franco, Bonifazi, Fedele, Scarpa, Maurizio, Ceci, Adriana, Odlind, Viveca Lena
Formato:	research systematic review Journal Article
Publicado:	Springer Nature Mar2017
Acceso en línea:	Ver este registro en EBSCOhost