Use of the patient-reported outcomes measurement information system (PROMIS®) to assess late-onset Pompe disease severity

• Główni autorzy: Melodi Harfouche (Autor), Priya S. Kishnani (Autor), Eva Krusinska (Autor), Jamie Gault (Autor), Sheela Sitaraman (Autor), Amanda Sowinski (Autor), Irina Katz (Autor), Stephanie Austin (Autor), Margi Goldstein (Autor), Andrew E. Mulberg (Autor)
• Format: Książka
• Wydane: SpringerOpen, 2020-10-01T00:00:00Z.
• Hasła przedmiotowe: article
• Dostęp online: Connect to this object online.

Abstract Background Patient-Reported Outcomes provide an opportunity for patients to establish dialogue with pharmaceutical or biotechnology companies about their health conditions without interpretation by a clinician or anyone else. However, Patient-Reported Outcomes that can be widely applicable...