Why measure quality of life and how?

On September 30th representatives from the OIFE attended a very informative webinar, which explored how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures. The webinar was organized by the foundation Findacure and the company HealX  and explored the ways to…


Focus Groups – Key4OI Plus

Some people felt that the project Key4OI were missing some important aspects of adult health in OI, when the first set of outcome measures in OI was developed. Now the project wants to develop an additional, supplementary set of outcome measures for 4 new areas.   Ears, teeth, lungs and heart Key4OI wants to develop…

Photo of OI-expert Richard Kruse wearing a suit and a conference badge.MEDICAL

Interview with Dr. Kruse

Dr. Richard W. Kruse recently published a new book on surgery in OI. OIFE was one of the consultants in the writing of the book, to secure that the voices of people with OI were represented. But dr. Kruse is not only a writer. He’s a busy doctor involved in many different projects and activities…


OIFE MAB-meeting on Key4OI & EuRR-Bone

Friday the 19th the Medical Advisory Board (MAB) of OIFE came together for their 2nd meeting in 2020. The topics included Key4OI and the new rare bone registry EuRR-Bone. In addition to the OIFE MAB, we had invited the OIFE EC, our resource group on registries and Tracy Hart from the OI Foundation. In total…


Key4OI: An Outcome measurement set

For the last 2 years experts from many different countries have been working together in Project “Key4OI”. The aim of this project was to develop a core outcome set for OI, children and adults. The focus is on: Outcomes that are relevant for most people with OI, worldwide, througout a life time. Input was provided…

Translate »