Open AccessThe Black Box of Technological Outcome Measures: An Example in Duchenne Muscular Dystrophy
Author(s) -
K. Naarding,
Mariska M. H. P. Janssen,
Ruben D. Boon,
Paulina J.M. Bank,
Robert Peter Matthew,
Gregorij Kurillo,
Jay J. Han,
Jan J. Verschuuren,
I. de Groot,
Menno van der Holst,
Hermien E. Kan,
Erik H. Niks
Publication year - 2022
Publication title -
journal of neuromuscular diseases
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.366
H-Index - 23
eISSN - 2214-3602
pISSN - 2214-3599
DOI - 10.3233/jnd-210767
Subject(s) - medicine , duchenne muscular dystrophy , range of motion , trunk , physical medicine and rehabilitation , wrist , physical therapy , construct validity , surgery , patient satisfaction , ecology , biology
Outcome measures for non-ambulant Duchenne muscular dystrophy (DMD) patients are limited, with only the Performance of the Upper Limb (PUL) approved as endpoint for clinical trials.