RESEARCH

ERN BOND HR-pQCT Working Group

The call from the European Reference Network on Rare Bone Diseases (ERN BOND) for building a working group around the use of High Resolution peripheral Quantitative Computed Tomography (HR-pQCT) in OI is still open, closing June 20th 2023. What is HR-pQCT? HR-pQCT can quantify bone microstructure in-vivo at a very low radiation dose, and could…

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InjectionMEDICAL

OI Research Update from Ultragenyx

As you may be aware, the company Ultragenyx is sponsoring a research study, titled Orbit, to determine the safety and efficacy of setrusumab (UX143), for the treatment of OI. The Phase 2 portion of this study was completed in February with 24 patients and they have announced the interim results. Click here to read the full…

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RESEARCH

4Frailty Project – Gait analysis and HR-pQCT in Italy

The IRCCS Istituto Ortopedico Rizzoli in Bologna, Italy has started recruitment of patients for two clinical studies. And the Italian OI organization As.It.OI (Associazione Italiana Osteogenesi Imperfetta Onlus) is helping with recruitment. The first 4Frailty project “Intelligent sensors, infrastructures and management models for the safety of fragile patients” – involves the use of an advanced…

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Advertising image - what is the toolbox on pain and what should be in it?EDUCATIONAL

Toolbox on pain and OI

In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta.  The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU…

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Photo of screen and presenterRESEARCH

OIFE at Advanced Therapies Seminar

Heavy snowfall didn’t stop osteogenesis imperfecta from being well represented at an educational seminar on challenges and possibilities in advanced therapies. The event was hosted on 13 March 2023 by Oslo University Hospital in Norway. Rebecca Tvedt Skarberg was on the organizing committee, Inger-Margrethe Stavdal Paulsen from Norsk Forening for Osteogenesis Imperfecta (NFOI) gave a talk about…

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OIFE

IMPACT SURVEY – First article published

An article called “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review” was published recently in Orphanet Journal of Rare Diseases. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and…

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MEDICAL

Functional performance in everyday activities

Interview with Verity Pacey, Physiotherapist & researcher, Sydney, Australia My name is Verity Pacey and I’m a physiotherapist from Sydney, Australia. I began working with children with OI around 20 years ago now. I had the privilege to work in a specialist multidisciplinary clinic for children with OI – the only one in Australia at…

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eurrbone logoADVOCACY

EURR-BONE Final Meeting

On February 13th we were four representatives from OIFE who attended the final meeting of the EuRR-Bone registry as a 3 year old project. Claudia Finis attended face to face and Taco van Welzenis, Rebecca Tvedt Skarberg and Ingunn Westerheim attended online. The project team in Leiden have delivered on all their milestones, and has…

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