Qualitative interviews to improve patient-reported outcome measures in late-onset Pompe disease: the patient perspective

por Hamed, Alaa, An Haack, Kristina, Gwaltney, Chad, Baranowski, Eileen, Stewart, Andrew, Krupnick, Robert, Tyler, Margaret, Sparks, Susan, Paty, Jean
Publicado 2021

Measurement Properties of 2 Novel PROs, the Pompe Disease Symptom Scale and Pompe Disease Impact Scale, in the COMET Study

por Dimachkie, Mazen M., Kishnani, Priya S., Ivanescu, Cristina, Flore, Giulio, Gwaltney, Chad, van der Beek, Nadine A.M.E., Hamed, Alaa, An Haack, Kristina, Pollissard, Laurence, Baranowski, Eileen, Sparks, Susan E., DasMahapatra, Pronabesh
Publicado 2023