Research initiatives

Although research is not the principal scope of ERNs, ERN BOND acts in order to facilitate research and clinical trials among members. This section illustrates the research initiatives endorsed by the network.

Call for collaborative clinical research

ERN BOND aims to favour research collaborations among network members to rapidly build up clinical series for rare skeletal disorders, to better delineate the clinical spectrum, natural history, and clinical management of these conditions.

A permanent call of collaborative clinical research is therefore open to clinicians working in the ambit of ERN BOND diseases. The call list will be disseminated through the monthly newsletter.

Clinical Trials & Research Studies

ERN BOND by liaising with relevant stakeholders, collects and disseminate to BOND members the information and activities with the aim to facilitate the good clinical trial conduct for Rare Bone Disorders.

ERN BOND supports also the development of investigator led studies in rare bone disorders, covering both clinical trials of investigational medical products and research studies not involving drugs.

In the past, the thematic group on Clinical Trials supported the development and conduction of a studies involving BOND expert centres to:
– validate the existing paediatric Osteogenesis Imerfecta Quality of Life tools and to,
– ascertain child and parent priorities for research in Osteogenesis Imperfecta.

Two clinical trials, under EU projects, are currently endorsed by ERN BOND and conducted by network members.

  • MCDS-Therapy, an open label phase I/II a trial repurposing carbamazepine (CBZ) for the treatment of children with metaphyseal chondrodysplasia, Schmid type (URL),
  • MOI-A study, a matrix-directed therapy in older adolescents and adults with osteogenesis imperfecta, within the REMEDI4ALL project.

List of clinical trials & research studies involving BOND expert centres (under update)