* Link together centres for RCMCID for the benefit of patients * Have a robust process in place to monitor activity * Interact with other networks to improve quality/safety of care * Create a forward...
* Link together centres for RCMCID for the benefit of patients * Have a robust process in place to monitor activity * Interact with other networks to improve quality/safety of care * Create a forward-looking network with future potential
Dissemination by lead CMFT NHS TRUST
Start month:1 - End month: 12
* Communicate effectively making use of IT * Improve provision of resources to patients * Share experience of the added value of ERNs
Evaluation by lead CMFT NHS TRUST
Start month:1 - End month: 12
* Build an ERN with high quality services * Improve equity of access for patients and trainees in less well developed MS * Add value to patient care
Expert Patient Care (formerly Guidelines Management) by lead CMFT NHS TRUST
Start month:1 - End month: 12
* Agree rare disorders and malformations where guideline required * Evaluation of existing guidelines against AGREE II * Improve patient care through use of high quality guidelines * Put in place a p...
* Agree rare disorders and malformations where guideline required * Evaluation of existing guidelines against AGREE II * Improve patient care through use of high quality guidelines * Put in place a process for new European guideline development
TeleHealth Diagnosis by lead CMFT NHS TRUST
Start month:1 - End month: 12
* Share diagnostic expertise for direct patient care * Develop TeleHealth approaches for patient care * Use Telehealth to identify and study new rare diseases
Patient Registries by lead CMFT NHS TRUST
Start month:1 - End month: 12
* Identify and utilise registries for RCMCID for the benefit of patients * Interact positively with registries to improve data quality * Promote connections registries/biobanks * Promote networking of...
* Identify and utilise registries for RCMCID for the benefit of patients * Interact positively with registries to improve data quality * Promote connections registries/biobanks * Promote networking of disease-specific national patient registries * Demonstrate improved patient care through use of EU registries
Research by lead CMFT NHS TRUST
Start month:1 - End month: 12
* Through establishment of the ERN, enhance research * Actively involve patients in the research agenda of the ERN * Share research knowledge and expertise through teaching and training * Generate ...
* Through establishment of the ERN, enhance research * Actively involve patients in the research agenda of the ERN * Share research knowledge and expertise through teaching and training * Generate research findings from our collaborative working
Teaching and Training by lead CMFT NHS TRUST
Start month:1 - End month: 12
* Define currently available education and training resources for professionals/families * Identify patients’ and professionals future education/training needs * Rapid dissemination of NEW informati...
* Define currently available education and training resources for professionals/families * Identify patients’ and professionals future education/training needs * Rapid dissemination of NEW information * Ensuring training needs for the future are met * Improve access to educational resources