Table 2.
Data Elements included in the OPMD registry
| Source of data element | Number of data elements |
|---|---|
| • NIH Office of Rare Diseases Research Standard’s CDEs | • V.1: 47, V.2: 42 |
| • Swallowing Quality of Life outcomes tool21 | • 45 |
| • Neuro-QOL Lower Extremity Function Item Bank | • 8 |
| • PROMIS Physical Function Item Bank | • 3 |
| • International Statistical Classification of Diseases codes | • 6 |
| • Current Procedural Terminology codes | • 6 |
| • U. of Rochester Myotonic Dystrophy and FSHD Registry | • 5 |
| • Rare Diseases Clinical Research Network Contact Registry | • 1 |
| • Sydney Swallow Questionnaire22 | • 1 |