OIFE supports and encourages the advancement into research to find new treatments, improve diagnosis and aid a better understanding of OI. Sometimes we are directly involved in research by co-authoring scientific articles.

This is a list of scientific articles where a volunteer from OIFE has contributed as co-author:


The IMPACT Survey: the economic impact of osteogenesis imperfecta in adults

The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and their caregivers

Project SATURN– a real-world evidence data collaboration with existing European datasets in Osteogenesis Imperfecta to support future therapies


The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review

Patient-reported experience of clinical care of osteogenesis imperfecta (OI) during the COVID-19 pandemic

Future Care Pathways – A report from the 1st workshop of the EHC Think Tank Workstream on Future Care Pathways



Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions

A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams.


OIFE do not keep a list of all the published research in OI. But our associate member The OI Foundation (OIF) publish a list of newly published research in OI. You can find it here.

Translate »