We invite you to register for a 1,5 hour webinar called “Clinical Trial Update 2023”. The goal of the webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. This includes the following trials: – The Cosmic and the Orbit trials (setrusumab) – The BoostB4 trial (stem…
Interview with Dr. Winnie Liu, Oregon Health and Science University (OHSU), Portland, Oregon, USA Dr. Winnie Liu is an adult endocrinologist and takes care of patients at Oregon Health and Science University (OHSU) located in Portland, Oregon. Her clinical and research interests are metabolic bone disease with a focus on OI after joining the BBDC (Brittle…
In OIFE Magazine 2-2023, we interviewed Clara I. Rodríguez who is the group leader of Stem cells and Cell therapy laboratory at Biocruces Bizkaia Health Research Institute in Bilbao, Spain. Our laboratory focuses on the potential of human stem cells and their derivatives for the study of diseases and the development of new therapeutic strategies.…
By Dr. Lars Folkestad, OIFE Medical Advisory Board Every year the OI Foundation (OIF) host a Scientific Meeting where researchers and clinicians from North America is invited for a 2-and-a-half-day long seminar focused on OI research. Lars Folkestad, member of OIFE’s Medical Advisory Board, joined the meeting in April and reports about it. Collaboration…
Interview with Prof. Gisele Martins, University of Brasilia (UnB), Brazil (main part) and Dr. Argerie Tsimicalis, McGill University, Canada Who are you & what is your relationship to OI? My name is Gisele Martins and I’m a professor of nursing at the University of Brasilia (UnB), Brazil. My involvement with the OI community started seeing…
EuRREB, the European Registries for Rare Endocrine and Bone Conditions consists of the EuRRECa and EuRR-Bone project. The registries are aimed at maximizing the opportunity for all patients, health care professionals, and researchers to participate and use high quality, patient-centred registries. The aim is to be Europe’s most comprehensive and accessible resource for researchers studying…
Physician statements on children with severe types of OI Dear colleague, In the literature there is very limited information on fracture incidence during the first years of life in children with OI type III and IV on early bisphosphonate treatment. We understand your busy schedule, but we would appreciate your quick input on the statement…
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…
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…
