Management of the project and coordination activities by lead SERMAS
Start month:1 - End month: 36
T1.1 Administration and management of the Consortium (SERMAS- HULP, M1-M36) T1.2 Technical Coordination (SERMAS- HULP, M2-M36) T1.3 Risk Management (SERMAS- HULP, M1-M36) T1.4 Quality Assurance (IPCZD...
T1.1 Administration and management of the Consortium (SERMAS- HULP, M1-M36) T1.2 Technical Coordination (SERMAS- HULP, M2-M36) T1.3 Risk Management (SERMAS- HULP, M1-M36) T1.4 Quality Assurance (IPCZD-CMHI, M2-M36) T1.5 Ethical standards / Informed Consent / Data Protection (IPCZD-CMHI, M2-M36) T1.6 Sustainability and financing plan (SERMAS- HULP, M1-M36) T1.7 Development and implementation Plan (SERMAS- HULP, M1-M36)
Dissemination and communication activities by lead AOUP
Start month:1 - End month: 36
T2.1 Planning outreach and dissemination activities (AOP, M1) T2.2 Design a portal-web project (AOP, M3) T2.3 Training activities (AOP, M2-M23) T2.4 Monitoring of the Communication Plan (AOP, M2-M36)
Evaluation of the project's output and impact by lead SLL
Start month:1 - End month: 36
T3.1 Definition of the validation and evaluation plan (SLL-KI, M0-M12) T3.2Implementation risk, quality and follow up' monitoring (SLL-KI, M12-M36)
Methodological and analytical clinical outcomes for registry development by lead SERMAS
Start month:1 - End month: 36
Requirements Analysis (M0-M6) T4.1 1Existing registries review and the state of the art including Interoperability requirements (SERMAS-HULP, M3-M6) T4.2 Stakeholder analysis, elicit expert opinion & ...
Requirements Analysis (M0-M6) T4.1 1Existing registries review and the state of the art including Interoperability requirements (SERMAS-HULP, M3-M6) T4.2 Stakeholder analysis, elicit expert opinion & create advisory board (SERMAS-HULP, M3-M6) T4.3 Map of Functional Requirements and Technical Design (SERMAS-HULP, M3-M6) Technical Design (M6-M12) T4.4 Review Current state of the art & Interoperability requirements (SERMAS-HULP, M6-M12) T4.5 External and internal sources of information (SERMAS-HULP, M6-M12) Prototype Testing and Validation (M12-M23) T4.6 Test and validation plan (SERMAS-HULP, M12-M18) Development (M12-M23) T4.7 Registry Development and release (SERMAS-HULP, M12-M23) T4.8 Business Intelligence component (SERMAS-HULP, M12-M23)
Patients/Families outcomes. Legal and ethical issues. by lead SERMAS
Start month:1 - End month: 36
T5.1 Legal & Confidentiality Aspects on PROMs and PREMs (IPCZD-CMHI, M2-M8) T5.2 Definition of patient's reported outcomes (PROMs) and patient's reported experiences measures (PREMs). (SERMAS-HULP, M1...
T5.1 Legal & Confidentiality Aspects on PROMs and PREMs (IPCZD-CMHI, M2-M8) T5.2 Definition of patient's reported outcomes (PROMs) and patient's reported experiences measures (PREMs). (SERMAS-HULP, M1-M6) T5.3 Pilot PROMs and PREMs: specific sites and populations. (SLL-KI, M12-M24) T5.4 Validation of PROMs and PREMs in the paediatric transplanted patient. (SERMAS-HULP, M24-M36) T5.5 Definition of education and training plan. (SERMAS-HULP, M12-M23) T5.6 Health Outcomes Analysis (SERMAS-HULP, M24-M36)
Registry Quality Assurance and monitoring by lead IPCZD
Start month:1 - End month: 36
T6.1 Data Considerations: Quality, Information types, and Dimensions. (IPCZD-CMHI, M2-M12) T6.2 Audit & Quality Assurance plan. (IPCZD-CMHI, M2-M12) T6.3 Evaluation and Improvement of Registry Service...
T6.1 Data Considerations: Quality, Information types, and Dimensions. (IPCZD-CMHI, M2-M12) T6.2 Audit & Quality Assurance plan. (IPCZD-CMHI, M2-M12) T6.3 Evaluation and Improvement of Registry Service. (IPCZD-CMHI, M12-M23) T6.4 Analysis of the overall results. (IPCZD-CMHI, M23-M36)