WG3 GOOD PRACTICE & GUIDELINES

Sweden

Sävendahl

Lars

Academic chair, Astrid Lindgren Children´s Hospital, Professor, Senior Consultant and Team Leader, Paediatric Endocrinology, Karolinska Institutet and University Hospital

lars.savendahl@ki.se

Sweden

Grigelioniene

Giedre

Karolinska Institutet and University Hospital

giedre.grigelioniene@ki.se

 

Objectives

To exchange, gather and disseminate knowledge, evidence and expertise within and outside the ERN, To develop and implement clinical guidelines and cross-border patient pathways, To design and implement outcome and performance indicators.

  • The identification, as a baseline, of the evidence for existing approaches to management of rare bone diseases.
  • The identification of priorities, according to strengths and weaknesses, for the implementation of actions, in accordance with ERN BOND Work Plan.
  • To develop guidelines for good clinical practice in diagnostics (with WG1)
  • To establish pathways for rapid interchange of information, skills and practice to shorten time to diagnosis and treatment (with WG7)
  • To develop evidence based clinical guidelines starting with OI and achondroplasia where the outcome may form a structure for generic guidelines for other skeletal dysplasias (with WG2)