Table 2.
Score | Optimal reference requirement | Requirement calculation mode | Assessment of the data quality score (quality metrics) |
---|---|---|---|
Update Center adherence to periodic central database update |
Participating centers are required to upload data to the central server every 6 months | Interval between the update report date and the last upload date | Within 6 months 5 points > 6 months and ≤ 1 year 4 points > 1 year and ≤ 2 years 3 points > 2 years and ≤ 3 years 2 points Over 3 years: 1 point |
N. Patients-year Sample size by center |
Number of patients-year in the top quintile | The number of patients per year is calculated as the sum of the follow-up years* of each patient *Interval in years between last and first visit date recorded |
Attribution based on quintile distribution: Within V quintile 5 points Within IV quintile 4 points Within III quintile 3 points Within II quintile 2 points Within I quintile 1 point |
Patients with FUP ≥ 5 years Sample size by center with prospective clinical follow-up ≥ 5 years |
% of patients with follow-up ≥ 5 years per center > 80%. | % of patients with follow-up ≥ 5 years per center | > 80% and ≤ 100% 5 points > 60% and ≤ 80% 4 points > 40% and ≤ 60% 3 points > 20% and ≤ 40% 2 points > 0% and ≤ 20% 1 point |
Active patients Patients in active status, i.e. at least one visit and/or contact with the center in the last two years |
% of patients in active status per center > 80% | % of patients in active status per center | > 80% and ≤ 100% 5 points > 60% and ≤ 80% 4 points > 40% and ≤ 60% 3 points > 20% and ≤ 40% 2 points > 0% and ≤ 20% 1 point |
VISIT every 6 months Semi-annual visit rates |
At least one visit every 6 months in the follow-up period in >80% of patients in each center | % of patients with at least one visit every 6 months in the follow-up period for center | > 80% and ≤ 100% 5 points > 60% and ≤ 80% 4 points > 40% and ≤ 60% 3 points > 20% and ≤ 40% 2 points > 0% and ≤ 20% 1 point |
EDSS every 6 months Semi-annual EDSS assessment rates |
At least one EDSS assessment every 6 months in the follow-up period in > 80% of patients in each center | % of patients with at least one EDSS assessment every 6 months in the follow-up period for center | > 80% and ≤ 100% 5 points > 60% and ≤ 80% 4 points > 40% and ≤ 60% 3 points > 20% and ≤ 40% 2 points > 0% and ≤ 20% 1 point |
I° visit within I°year from onset First visit within 1 year of the disease onset |
At least one visit within one year of the disease onset in >80% of patients in each center | % of patients with at least one visit within 1 year of the disease onset for center | > 80% and ≤ 100% 5 points > 60% and ≤ 80% 4 points > 40% and ≤ 60% 3 points > 20% and ≤ 40% 2 points > 0% and ≤ 20% 1 point |