RESEARCH

Physical Function & Soft Tissue Health in OI

Interview with Dr. Alex Ireland and Dr. Sergio Orlando Who are you and what is your relationship to OI? My name is Dr Alex Ireland, Senior Lecturer in Physiology at Manchester Metropolitan University, UK. My research has previously focused on how the shape and structures of our bones and joints is affected by physical activity…

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RESEARCH

Publish clinical trials!

The European Commission (EC), the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) have co-signed a letter reminding all sponsors of clinical trials conducted in the European Union of their obligation to make summaries of results of concluded trials publicly available in the EU Clinical Trials Database (EudraCT). The OIFE supports this…

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CONFERENCES

Impressions from ‘See, Hear, Smile!’

Armaana Ahmad Paediatric Dentistry, Eastman Dental Hospital London I am a Paediatric dentistry and junior researcher interested in dental anomalies in children with OI. I don’t have a formal relationship with OIFE but would like to! I think the Topical Meeting was excellent. Well thought out content allowed networking and sharing of current research with…

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CONFERENCES

Patient Outcomes

Many people & projects are talking about patient outcomes & outcome measures these days. Today at the #iccbh2019 there was a poster presentation from Australia which reported that 1782 different outcome measures were used in 19 different trials about OI. This big variety makes it challenging to compare research across borders and between projects. We…
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New Rare Bone Network

Yesterday OIFE was happy to co-host the establishing meeting of a multistakeholder rare bone network together with Hypophosphatasie Deutschland e.V. and ANDO Portugal with the kind support of the European Calcified Tissue Society – ECTS and the ICCBH-conference. The background for the initiative was among others connected to OIFE’s project ‘A stronger BOND between us‘.…

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CONFERENCES

New European Rare Bone Network

Yesterday OIFE was happy to co-host the establishing meeting of a multistakeholder rare bone network together with Hypophosphatasie Deutschland e.V. and ANDO Portugal with the kind support of the European Calcified Tissue Society – ECTS and the ICCBH-conference. The background for the initiative was among others connected to OIFE’s project ‘A stronger BOND between us‘.…

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EVENTS

OIFE AGM 2019

The See, Hear, Smile conference was followed by OIFE’s Annual General Meeting (AGM) from June 15th – 16th in Riga, Latvia. In addition to the business part of the meeting, we also shared good examples between our member organizations. Dr. Eva Åstrøm from Sweden gave an update on ERN BOND and the company Mereo Biopharma…

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RESEARCH

Webinar on registries

Registries was one of the main topics at OIFE AGM. Mr. George Reynolds (photo) gave a talk about the status on OI-registries in Europe and what will be needed in the future. Patient registries represent a fundamental pillar upon which a number of critical activities are based to understand patient experiences and outcomes, as well…

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