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. 2018 Nov 13;40(1):155–165. doi: 10.1007/s10072-018-3610-0

Table 2.

Performance indicators

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