The group will create guidelines for the management and monitoring of GD which can be used internationally to improve experience and outcomes for Gaucher patients

Objectives:

1. To improve access to treatment for all patients
2. To reduce health inequalities for GD patients
3. To produce guidelines based in available evidence
4. To define evidence gaps and a plan for research in relation to gaps
5. To create international consensus based in evidence
6. To publish guidelines rapidly in an easily accessible open access format
7. To simultaneously publish a patient- accessible version of the guidelines
8. To publish guidelines in a peer reviewed journal as appropriate

The aim of the adopted methodology is to define the critical needs for guideline statements, to review currently available evidence and to build consensus around statements to ensure wide adoption. The group will understand the need for guidelines to specific problems in the management of Gaucher Disease through surveying our members and affiliated stakeholders. We will then use a synthesis of evidence and consensus to create recommendations which address this need. Areas to be addressed include the use of specific therapies for Gaucher disease in adult and children with both non-neuronopathic and neuronopathic GD. All guidelines will be per reviewed and presented on the EWGGD website

The group has been working on understanding what is most important from our members, colleagues and patients for a guideline. We have been considering the methodology for gathering evidence and creating evidence-based consensus for the various management issues