PUBLISHED ARTICLES

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:

2024

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

2023

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

 

2021

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.

PUBLISHED OI RESEARCH

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.

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