WG6 Interactions with Other ERNs

Italy

Brandi

Maria-Luisa

Metabolic Bone Diseases Unit, University Hospital of Florence – AOUC, Florence

m.brandi@dmi.unifi.it

Netherlands

Zillikens

Carola

Bone Center Erasmus MC Rotterdam, the Netherlands

m.c.zillikens@erasmusmc.nl

 

Objectives

 

The aim of the Working Group on interactions with other ERNs is to work on overlapping diseases with other ERNs, e.g., with the ERN on Rare Endocrine Conditions (Endo-RARE ERN) on disorders of calcium and phosphate homeostasis including X-linked hypophosphatemia and dyschondrosteosis; with the ERN for Hereditary Metabolic Diseases (MetabERN) on lysosomal diseases; with the Rare Connective Tissue and Musculoskeletal Diseases Network (ReCONNET) on Ehlers Danlos disease; with Crania ERN; with the ERN for Rare Renal Diseases (ERN-RDD) on X-linked hypophosphatemia and with any other ERN that may include diseases that affect bone.

The inter-ERN approach will conceptualize the multidisciplinary vision on patients care by providing a bridge of knowledge and competencies among BOND and other ERNs at all the levels: HC providers, HC professionals and Patient representatives. Also, the aim of the inter-ERN working group is to promote coordinated care and innovative research through the definition of common strategies. Instruments that support cross-ERN diagnosis, follow-up and treatment are vital for patient pathway definition and precision medicine.

  • To identify and fill research gaps, 
  • To exchange and disseminate knowledge and best practices,
  • To set up communication tools, and methodologies to develop clinical guidelines and protocols.

 

A meeting with the 7 ERNs linked by overlapping diseases will lead to finalize the Inter-ERN Diagnosis and Treatment Strategy Plan, which describes the list of overlapping diseases, the actions to be taken in the following Years of ERNs and clear indicators to measure outcomes. In addition, the meeting will lead to initiate the writing of the manuscript guiding clinicians in the area of hypophosphatemic disorders to be carried out with the Endo ERN working group on mineral metabolic disorders.

The Inter- ERN collaboration will lead to propose a set of CROSS-ERN tools for diagnosis, follow-up and management for the individuated overlapping disorders. These tools will, at first step, be designed to support and further develop CPMS functionalities dedicated to Inter-ERN activities.