Informed consent and patient registry for the rare disease community: Editorial.
Christine
C
Grady
Yaffa R
YR
Rubinstein
Stephen C
SC
Groft
D019983:Guideline Adherence; D006801:Humans; D007258:Informed Consent / Q000592:standards*; D010344:Patient Advocacy; D035583:Rare Diseases; D012042:Registries / Q000592:standards*