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/) |