Work Packages

Work Package 3 - Agree upon methodology for production of guidelines on clinical management of rare diseases

Leader  Thomas Sejersen - Karolinska Institutet, Sweden



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



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)