EDITORIALS

Patients, people or partners?

OIFE believes that all clinical trials and research projects affecting OI directly, should have some kind of patient involvement. Patient involvement can happen in different ways and in different phases of a project. Sometimes advice from a new and unexperienced parent or a child is needed. Other times a person with OI, who can represent…

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Woman looking through microscopeADVOCACY

Accelerating Clinical Trials in the EU

The European Commission (EC), the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) have launched an initiative to transform how clinical trials are initiated, designed, and run. This initiative, accelerating Clinical Trials in the EU (ACT EU), aims to further develop the European Union as a focal point for clinical research, promote…

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RESEARCH

Help OI-researchers and earn 50$

Are you 18 years or older and do you have OI? Or are you the parent/caregiver of someone aged 0-17 with OI? Are you able to read and write English well? Then OIFE and our collaborators are looking for your help!  The pharma company Ultragenyx is developing a new treatment for OI. To test the…

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BOOSTB4 logoMEDICAL

Announcement on the clinical trial BOOSTB4

In Sweden, the Karolinska Institutet and the Karolinska University Hospital are leading the academic clinical trial BOOSTB4 where we are looking for subjects who have a diagnosis of OI Type III or severe Type IV with a specific collagen mutation. The aim of the clinical trial is to study the safety and efficacy of the…

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RESEARCH

The TOPAZ Trial is recruiting adults with OI

The TOPAZ Trial is recruiting adults with OI in UK, Ireland, Netherlands, France and Denmark. The trial is designed to determine if anabolic therapy with Teriparatide (TPTD) followed by a single infusion of zoledronic acid (ZA) is superior to standard care in adults with OI. The trial is open to anyone over 18 years with…

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