OIFE advocates for patient involvement in all clinical trials and research for Osteogenesis Imperfecta (OI) and other rare diseases. Advanced Therapy Medicinal Products (ATMPs) are innovative medicines for human use based on genes, cells, or tissues. This includes stem cells, that are currently being researched for OI. EURORDIS hosted two webinars about the topic: Webinar…
The Evenity trial (romozosumab) is currently recruiting in the following countries: Australia, Austria, Belgium, Canada, China, France, Germany, Hungary, Japan, Poland, Slovakia, Spain, Switzerland, Turkey, United Kingdom and the USA. You can find more information about the Evenity trial and the sites included here. If you are wondering what clinical trials are, you can check…
A new clinical trial map is now accessible from the public website of the Clinical Trials Information System (CTIS). The map is designed to provide patients and healthcare professionals with easy access to comprehensive, real-time information about clinical trials conducted in their area, increasing access to clinical research in the European Union (EU). The map…
Summary written by Taco van Welzenis, OIFE Honorary Member Due to the fast developments in the field, OIFE decided to organize another update on clinical trials after the first edition in 2023. An amazing number of 278 people from 55 countries (marked in blue) signed up for the OIFE Clinical Trial Update which took place…
An amazing number of 278 people from 55 countries (marked in blue on the map) signed up for the OIFE Clinical Trial Update which took place October 22nd, showing that OIFE’s outreach is growing year by year. In the end we were around 130 participants who received lots of information and updates from the following…
We invite you to register for a 1,5 hour webinar called “Clinical Trial Update 2023”. GOAL & TARGET GROUP The goal of the webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. The target group is anyone interested in OI-related research – both professionals and people…
TOPaZ is a randomised open-label clinical trial for people with osteogenesis imperfecta (OI). The study aims to investigate whether a two-year spell of treatment with a drug called teriparatide (TPTD) followed by treatment with another drug called Zoledronic acid (ZA) reduces the risk of broken bones occurring in people with OI. The TOPaZ trial receives…
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…
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…
