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Table 4 RaDiCo e-cohorts key performance indicators (KPI)

From: RaDiCo, the French national research program on rare disease cohorts

KPI 1 Methodology/biostatistics expertise as SC member
KPI 2 One Scientific Committee meeting per year with reporting
KPI 3 One yearly global RaDiCo progress report
KPI 4 Yearly cohort-specific progress reports
KPI 5 Reinforcement of the biostatistical expertise
KPI 6 Number of Scientific/Steering Committee meeting repoarts according to the predefined scientific agenda of each cohort (protocol and timelines)
KPI 7 Cohorts’ progress reports including accrual rate of prevalent and incident cases recruited
KPI 8 Number of recruitment sites in France/Europe per cohort
KPI 9 Number of per site actual recruitments per cohort, according to pre-defined six-month objectives
KPI 10 Loss to follow-up of included patients/death
KPI 11 Completeness of data collection
KPI 12 Per cohort data management status
KPI 13 Whenever relevant, number of bio samples collected/associated to clinical data collected
KPI 14 Integration to the National RD Plan (PNMR3), RD European Joint Program (EJP) and European Reference Networks activities
KPI 15 Scientific publications/communications produced by each cohort and the RaDiCo platform
KPI 16 Number of Specific Research Projects exploiting each cohort’s resources (data and biocollections)
KPI 17 Number of EU projects (H2020/COST/ERN) valorising/integrating RaDiCo cohorts
KPI 18 Implementation and follow-up of the Infrastructure as a Service, also proposed as a service to other cohorts of non-rare diseases; conformity to the European General Data Protection Regulation through yearly security audit results
KPI 19 Building an exchange framework with the French Health Data Hub Services (https://www.health-data-hub.fr/)