Work Packages

All the activities are carried out within 7 Work Packages. Each WP has leaders in charge to manage and coordinate the scientific activities. Patient representatives are present in each WP and work together with the experts.

View Work Packages Leaders

Objectives

  • to maintain the coordination, management, operational activities, governance, financial, reporting and communications structures of ERN BOND, including full integration of the new members in 2022
  • to disseminate generated knowledge on RBDs and other complex conditions across the network and among advocacy organizations and beyond through ePAGs and active cross-ERN and external collaborations, including collaborations in the cross-ERN ERICA project and EJP RD activities
  • to monitor network and HCPs performances through internal monitoring system and contribution to the ERNs monitoring system
  • to liaise with relevant stakeholders collecting the information and existing activities in place and disseminating them to BOND HCPs to facilitate the good clinical trial conduct for Rare Bone Disorders.

WP4 overall aims to provide highly specialised virtual multi-disciplinary advice on patients with Rare Bone Disorders or complex conditions using the CPMS – Clinical Patient Management System.

In particular, it aims

  • to provide expert input for the new CPMS developments to give access to the knowledge and experience of the different member centres to the other specialists within or outside the ERNs
  • to implement and facilitate the use of CPMS platform
  • to evaluate the needs of CPMS users

WP5 focuses on two general objectives: contributing to the further development of EuRR-Bone, the registry supporting the needs of ERN BOND, and plan the development of other digital activities for further understanding of various aspects of the patient’s care pathway

In particular, it aims

  • to contribute to research activities, by further developing EuRR-Bone
  • to participate and collaborate through the registry both in the cross-ERN ERICA project, the EJP RD activities and the interaction with the Rare Bone Disease Group of the European Calcified Tissue Society
  • to map and assess the role of gait analysis among members of ERN BOND and other stakeholders as advocacy organizations and European Pediatric Orthopaedic Society
  • to assess the possibility of an IT Tool for the standard analysis of HRpQCT in bone fragility
  • to conduct a review of the literature on gait analysis in patients with rare bone disorders and to perform a survey for identifying the role of gait analysis in clinical decision making for patients with rare bone disorders

WP6 plans to deliver education and training activities on Rare Bone Disorders and complex conditions by maintaining and improving the ERN BOND educational programme in collaboration with ePAGs, RBDs patients and advocacy organizations and to develop Clinical Practice Guidelines and other Clinical Decision Support Tools for Rare Bone Disorders or complex conditions

In particular, WP6 aims

  • to map gaps, needs and challenges in Education and Training in Rare Bone and Mineral Disorders among ERN BOND and other ERNs involved in the care of other rare conditions with skeletal involvement
  • to develop a comprehensive Education Programme and deliver Education and Training activities for Rare Bone and Mineral Disorders
  • to map existing Clinical Practice guidelines for Rare Bone and Mineral Disorders used by ERN BOND members to determine the need for harmonisation and to update of currently used guidelines, focusing on Osteogenesis Imperfecta

WP7 intends to obtain a comprehensive characterization of Rare Bone Disease diagnosis and develop a more accurate diagnostic pathways for ensuring reduced time to diagnosis with fewer inappropriate tests

In particular, WP7 aims

  • to map clinical, radiological, genetic and biochemical practices in the diagnosis of skeletal dysplasias, including ultra-rare skeletal dysplasias among BOND members
  • to prepare Clinical Practice Guidelines for ultra-rare skeletal dysplasias
  • to gather the main field of expertise of HCP members and facilitate the participation of HCPs in grant calls
  • to harmonise the nosology and classification of genetic disorders of the skeleton in collaboration with Orphanet and the International Skeletal Dysplasia Society