Work Packages
Work Package 3 - Agree upon methodology for production of guidelines on clinical management of rare diseases
Leader Thomas Sejersen - Karolinska Institutet, Sweden
Objectives
WP3 is responsible for leading work to agree on methodological quality standards for the development of guidelines on clinical management of RD
- to delineate the current state of existing institutional programmes, as well as processes and tools for developing, updating, adapting guidelines in the field of RD
- to define methodological quality standards for BP guidelines on RD
- to develop one new BP guideline for a specific rare condition implementing the methodological quality standards and utilizing a web community
- to develop a methodology to implement through Business Processes Modelling Notation (BPMN) implicit processes subtended by the guideline activities
Deliverables
D3.1 – Report on the Ethical regulations applicable at the Survey (M02)
D3.2 - State of the art of BP guidelines (M10)
D3.3 - Methodology for BP guidelines on RD (M20)
D3.4 - Method of representation of BP guideline through BPMN (M36)
D3.5 - Pilot BP guideline (M36)
D3.6 - Patient version of the pilot BP guideline (M42)