Table 7.
Completeness DQIs in CLARION
| DQI | Danish MS Registry | Finnish MS Registry | MSBase (multiple countries) | MSDS3D (Germany) | Norwegian MS Registry and Biobank | Swedish MS Registry | Swiss MS Cohort | US Department of Defense |
|---|---|---|---|---|---|---|---|---|
| DQI 1; records of MS treatment with missing start date (%) | ||||||||
| Only day missing | 0.0 | 0.0 | 0.0 | 14.4 | 0.0 | 0.0 | 1.0 | 0.0 |
| Both month and day missing | 0.0 | 0.0 | 0.0 | 4.9 | 0.0 | 0.0 | 0.0 | 0.0 |
| Completely missing | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 |
| Unknown | NA | NA | NA | 2.1 | NA | NA | NA | NA |
| DQI 2; records of AESI with missing details (%)a | NA | NA | NA | 43.9 | NA | NA | NA | NA |
| DQI 3; records of lymphocyte count with missing date (cladribine cohort) (%)b | ||||||||
| Only day missing | NA | 0.0 | 0.0 | 0.0 | NA | 0.0 | 0.0 | 0.0 |
| Both month and day missing | NA | 0.0 | 0.0 | 0.0 | NA | 0.0 | 0.0 | 0.0 |
| Completely missing | NA | 0.0 | 21.2 | 0.0 | NA | 0.0 | 0.0 | 0.0 |
| DQI 4; patient dropout by year (%) | ||||||||
| 2017 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 |
| 2018 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 |
| 2019 | 0.3 | 0.2 | 1.0 | 0.6 | 0.0 | 0.0 | 0.0 | 0.3 |
| 2020 | 0.3 | 0.0 | 5.4 | 1.4 | 0.0 | 0.0 | 2.2 | 0.9 |
| 2021 | 0.3 | 0.0 | 0.1 | 3.2 | 0.2 | 0.0 | 0.0 | 0.6 |
| 2022 | 0.1 | 0.0 | 0.1 | 4.4 | 0.1 | 0.3 | 1.1 | 0.0 |
| DQI 5; records of severe lymphopenia with missing stop date (%)c | NA | NA | 100 | 1.0 | 0.0 | NA | NA | NA |
| DQI 6; records of MS treatment with missing stop date (%)d | ||||||||
| Only day missing | NA | 14.5 | 0.0 | 16.8 | 0.0 | NA | 14.1 | NA |
| Both month and day missing | NA | 0.8 | 0.0 | 3.8 | 0.0 | NA | 2.4 | NA |
| Completely missing | NA | 0.0 | 0.9 | 0.0 | 0.0 | NA | 0.8 | NA |
| Unknown | NA | NA | NA | 2.1 | NA | NA | NA | NA |
| DQI 7; records of missing reason for treatment discontinuation (cladribine cohort) (%)e | 0.0 | 28.1 | 21.2 | 0.6 | 0.0 | 0.0 | 0.0 | NA |
| DQI 8; records of missing reason for treatment discontinuation (fingolimod cohort) (%)e | 0.0 | 0.0 | 19.8 | 0.0 | 0.0 | 0.0 | 0.0 | NA |
| DQI 9; patients with missing birth date (%) | ||||||||
| Only day missing | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 |
| Both month and day missing | 0.0 | 0.0 | 0.0 | 100 | 0.0 | 0.0 | 0.0 | 0.0 |
| Completely missing | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.3 | 0.0 | 0.0 |
| DQI 10; patients with missing sex (%) | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 | 0.0 |
| DQI 11; patients with missing MS onset date (%)f | ||||||||
| Only day missing | 0.3 | 21.3 | 0.0 | 41.6 | 76.9 | 18.3 | 26.4 | NA |
| Both month and day missing | 39.2 | 10.6 | 0.0 | 27.8 | 23.1 | 15.4 | 22.0 | NA |
| Completely missing | 0.0 | 1.9 | 2.1 | 0.0 | 0.0 | 2.4 | 2.1 | NA |
| Unknown | NA | NA | NA | 8.5 | NA | NA | NA | NA |
| DQI 12; patients with missing MS diagnosis date (%)f | ||||||||
| Only day missing | 0.3 | 6.4 | 0.0 | 44.0 | 0.0 | 2.1 | 17.6 | NA |
| Both month and day missing | 26.0 | 3.3 | 0.0 | 19.6 | 0.0 | 3.0 | 13.2 | NA |
| Completely missing | 0.0 | 0.0 | 4.9 | 0.0 | 0.0 | 1.8 | 1.1 | NA |
| Unknown | NA | NA | NA | 2.0 | NA | NA | NA | NA |
Notes: Cut-off date for most recent data quality indicators: November 1, 2022. aEvaluated for MSDS3D only (the only data source that collected relevant information). bNot evaluated for the Danish MS Registry or the Norwegian MS Registry and Biobank as these data sources did not record lymphocyte counts. Evaluable for a subset of patients with laboratory values (~30%) in the US Department of Defense. cNot evaluated in the Danish, Finnish, and Swedish MS registries as information on severe lymphopenia was not available. Data from the US Department of Defense were not available at the time of analysis. It was not evaluable in the Swiss MS Cohort as no lymphopenia episodes were included in the denominator. dNot evaluated in the Danish and Swedish MS registries, or the US Department of Defense. eNot reported for the US Department of Defense as the data source did not record treatment discontinuations. fNot reported for the US Department of Defense as the data source did not record MS onset date and the exact date of MS diagnosis.
Abbreviations: AESI, adverse events of special interest; DQI, data quality indicator; MS, multiple sclerosis; MSBase, MS Database; MSDS3D, MS Management System 3D; NA, not applicable.