WP3 Members:
| Luca Persani (WP lead) | Milan, IT | Istituto Auxologico Italiano |
| Domenica Taruscio (WP deputy) | Rome, IT | Istituto Superiore di Sanità |
| Marco Bonomi | Milan, IT | Istituto Auxologico Italiano |
| Graziano Grugni | Milan, IT | Istituto Auxologico Italiano |
| Yllka Kodra | Rome, IT | Istituto Superiore di Sanità |
| Claudio Carta | Rome, IT | Istituto Superiore di Sanità |
| Alessio Coi | Pisa, IT | National Research Council |
| Marco Roos | Leiden, NL | Leiden University Medical Centre |
WP3 Deliverables:
| Deliverable | Title | Estimated Delivery Date | Status |
| D3.1 | Tool for checking the quality of registries | 31 Jan 2019 | ✓ |
| D3.2 | Interim Report on Quality Assurance & Evaluation | 31 Jan 2019 | ✓ |
| D3.3 | Interim Report on Quality Assurance & Evaluation | 31 Jul 2019 | ✓ |
| D3.4 | Interim Report on Quality Assurance & Evaluation | 31 Jan 2020 | ✓ |
| D3.5 | Final Report on on Quality Assurance & Evaluation | 31 Jul 2021 | ✓ |
WP3 Meetings:
- 12 July at 11 am: WP3 face-to-face meeting, IRCCS Istituto Auxologico Italiano, Via Magnasco 2, 3rd floor, MILAN.
WP3 Resources:
- Recommended Practices for Data Standardisation in the Context of the operation of European Reference Networks (RD-ACTION Output, 2017)
- Data Quality in Rare Diseases Registries
- Recommendations For Improving The Quality of Rare Disease Registries. Kodra Y et al (2018) Int. J. Environ. Res. Public Health
- EC JRC Recommendation For Core Data Elements
- D3.1 Checklist quality evaluation 25/1/2019 (old version)
- D3.2 Interim Report on Quality Assurance & Evaluation_28.1.19
- D3.3 Interim report on Quality Assurance & Evaluation month-18 15.8.19
- D3.4 Interim Report on Quality Assurance & Evaluation month 24 31.1.20
- D3.5 Final Report on Quality Assurance and Evaluation 31.07.21
- The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry. Ali et al (2021) Int. J. Environ. Res. Public Health (evaluation criteria)
- Affiliate registries evaluation resources (new checklist)
EuRRECa 