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European Reference Network For Rare Congenital Malformations and Rare Intellectual Disability [ERN-ITHACA] [811487] - Operating Grant

Other deliverables - 7 output(s)

Implement Network Evaluation Plan lead by CMFT NHS TRUST - [D.1]
Type: Document, reports...
Published on: 31/07/2019

Evaluation plan written by Management team and agreed at Board level
EP reviewed throughout year, with summary/analysis included in Year 2 Technical Report
Agreed high quality strategy, including data set, for patient registry agreed lead by CMFT NHS TRUST - [D.2]
Type: Document, reports...
Published on: 31/07/2019

Registries WP to lead scoping measures exercise, then propose, agree and circulatestrategy.
Results of patient survey on research lead by CMFT NHS TRUST - [D.3]
Type: Document, reports...
Published on: 31/07/2019

Research WP to draft survey and circulate to Patient Groups. Results collated, discussed and circulated/uploaded to core IT platforms
Report from patient research group lead by CMFT NHS TRUST - [D.4]
Type: Document, reports...
Published on: 31/07/2019

Interested parties contacted, first call/meeting held
Completed education/training needs survey lead by CMFT NHS TRUST - [D.5]
Type: Document, reports...
Published on: 31/07/2019

Results from Teaching and Training survey discussed and circulated/uploaded
e-Learning module developed lead by CMFT NHS TRUST - [D.6]
Type: Demonstrator, pilot, prototype
Published on: 31/07/2019

Software licence purchased, staff trained, module developed by PM team and Coordinator.
List of meeting reports from high quality meetings and conferences which have been published on the website lead by CMFT NHS TRUST - [D.7]
Type: Document, reports...
Published on: 31/07/2019

WP leaders compile list, circulate and ITHACA members write reports of meetings, send to PM team, reports uploaded throughout the year