Table 1.
Heat map showing availability of variables by MS phenotype expressed in number of patients (variables available cross-sectionally at baseline and variables available longitudinally).
Colour scale | ||||||
---|---|---|---|---|---|---|
0% | <5% | 5% – 25% | 25% – 50% | 50% – 75% | 75% – 100% | |
Variables available at baseline | ||||||
Total | POMS | RRMS | SPMS | PPMS | ||
34,957 | 235 | 31,863 | 1873 | 986 | ||
Demography | Age | 34,928 (99.9%) | 235 (100%) | 31,834 (99.9%) | 1873 (100%) | 986 (100%) |
Sex | 34,955 (100%) | 235 (100%) | 31,861 (100%) | 1873 (100%) | 986 (100%) | |
Race | 29,693 (84.9%) | 233 (99.1%) | 26,614 (83.5%) | 1860 (99.3%) | 986 (100%) | |
BMI | 20,701 (59.2%) | 219 (93.2%) | 17,772 (55.8%) | 1737 (92.7%) | 973 (98.7%) | |
MS Disease History | Treatment naϊve status | 26,373 (75.4%) | 226 (96.2%) | 23,338 (73.2%) | 1832 (97.8%) | 977 (99.1%) |
Duration since first symptoms | 32,362 (92.6%) | 227 (96.6%) | 29,325 (92%) | 1826 (97.5%) | 984 (99.8%) | |
Number of relapses in last 1 year | 31,464 (90%) | 227 (96.6%) | 29,397 (92.3%) | 1827 (97.5%) | 983 (99.7%) | |
Number of relapses in last 2 year | 30,809 (88.1%) | 227 (96.6%) | 28,744 (90.2%) | 1825 (97.4%) | 983 (99.7%) | |
EDSS | Total score | 30,316 (86.7%) | 232 (98.7%) | 27,256 (85.5%) | 1852 (98.9%) | 976 (99%) |
Functional scores | 13,474 (38.5%) | 216 (91.9%) | 10,505 (33%) | 1784 (95.2%) | 969 (98.3%) | |
Ambulation score | 10,115 (28.9%) | 215 (91.5%) | 7146 (22.4%) | 1784 (95.2%) | 970 (98.4%) | |
MSFC | Timed 25-foot walking test | 8915 (25.5%) | 2 (0.9%) | 6166 (19.4%) | 1777 (94.9%) | 970 (98.4%) |
Nine-hole peg test | 8836 (25.3%) | 2 (0.9%) | 6152 (19.3%) | 1732 (92.5%) | 950 (96.3%) | |
PASAT | 6958 (19.9%) | 1 (0.4%) | 4342 (13.6%) | 1651 (88.1%) | 964 (97.8%) | |
MRI | Sum. results from central reader | 13,220 (37.8%) | 216 (91.9%) | 10,297 (32.3%) | 1738 (92.8%) | 969 (98.3%) |
Scans available for re-analysis | 6744 (19.3%) | 1 (0.4%) | 4264 (13.4%) | 1719 (91.8%) | 760 (77.1%) | |
Other | SDMT | 2491 (7.1%) | 211 (89.8%) | 648 (2%) | 1632 (87.1%) | 0 (0%) |
NfL | 2601 (7.4%) | 0 (0%) | 840 (2.6%) | 1414 (75.5%) | 347 (35.2%) | |
EQ-5D | 6428 (18.4%) | 1 (0.4%) | 3849 (12.1%) | 1628 (86.9%) | 950 (96.3%) | |
MFIS | 1947 (5.6%) | 0 (0%) | 1947 (6.1%) | 0 (0%) | 0 (0%) | |
MSIS-29 | 5934 (17%) | 0 (0%) | 4180 (13.1%) | 1748 (93.3%) | 6 (0.6%) | |
PRO | MSWS-12 | 2415 (6.9%) | 0 (0%) | 0 (0%) | 1623 (86.7%) | 792 (80.3%) |
Relapses | 34,957 (100%) | 235 (100%) | 31,863 (100%) | 1873 (100%) | 986 (100%) | |
EDSS | Total score | 22,286 (63.8%) | 227 (96.6%) | 19,279 (60.5%) | 1815 (96.9%) | 965 (97.9%) |
Variables available longitudinally | ||||||
Functional scores | 12,712 (36.4%) | 217 (92.3%) | 9782 (30.7%) | 1756 (93.8%) | 957 (97.1%) | |
Ambulation score | 9983 (28.6%) | 215 (91.5%) | 7053 (22.1%) | 1758 (93.9%) | 957 (97.1%) | |
MSFC | Timed 25-foot walking test | 8988 (25.7%) | 2 (0.9%) | 6296 (19.8%) | 1736 (92.7%) | 954 (96.8%) |
Nine-hole peg test | 8867 (25.4%) | 2 (0.9%) | 6214 (19.5%) | 1713 (91.5%) | 938 (95.1%) | |
PASAT | 6993 (20%) | 1 (0.4%) | 4432 (13.9%) | 1608 (85.9%) | 952 (96.6%) | |
MRI | Sum. results from central reader | 11,556 (33.1%) | 211 (89.8%) | 8849 (27.8%) | 1632 (87.1%) | 864 (87.6%) |
Scans available for re-analysis | 6355 (18.2%) | 1 (0.4%) | 4067 (12.8%) | 1619 (86.4%) | 668 (67.7%) | |
Other | SDMT | 4268 (12.2%) | 209 (88.9%) | 2364 (7.4%) | 1695 (90.5%) | 0 (0%) |
NfL | 4417 (12.6%) | 0 (0%) | 2531 (7.9%) | 1549 (82.7%) | 337 (34.2%) | |
PRO | EQ-5D | 8898 (25.5%) | 1 (0.4%) | 6248 (19.6%) | 1704 (91%) | 945 (95.8%) |
MFIS | 1876 (5.4%) | 0 (0%) | 1876 (5.9%) | 0 (0%) | 0 (0%) | |
MSIS | 5394 (15.4%) | 0 (0%) | 3674 (11.5%) | 1714 (91.5%) | 6 (0.6%) | |
MSWS | 2394 (6.8%) | 0 (0%) | 0 (0%) | 1584 (84.6%) | 810 (82.2%) |
The percentage of missing data relates to the overall NO.MS database; Note that different types of studies collected data for different sets of endpoints as pre-specified in the respective study protocols, i.e. missing information may not be equally distributed throughout NO.MS, rather dependent on the type of study.BMI: body mass index; EDSS: expanded disability status scale; EQ-5D: EuroQol 5-dimension; MFIS: modified fatigue impact scale; MRI: magnetic resonance imaging; MS: multiple sclerosis; MSFC: multiple sclerosis functional composite; MSIS-29: multiple sclerosis impact scale 29-item; MSWS-12: multiple sclerosis walking scale 12-item; NfL: neurofilament light; PASAT: paced auditory serial addition test; POMS: paediatric-onset MS; PPMS: primary progressive MS; PRO: patient-reported outcome; RRMS: relapsing–remitting MS; SDMT: symbol digit modalities test; SPMS: secondary progressive MS; WPAI: work productivity and activity impairment; Sum. results from central reader: common MRI parameters read by central MRI readers: number of Gd+ lesions, T2 lesion volume and normalised brain volume; scans available for re-analysis (raw scans were obtained in DICOM format, after defacing and anonymising the scans and they are now available for re-analysis in NIFTI format).