RESEARCH

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…

READ MORE
OIFE

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…

READ MORE
MEDICAL

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…

READ MORE
CONFERENCES

Join Quality of Life 4 OI!

Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam! The Conference organized by Foundation Care4BrittleBones together with OIFE, OIF, ERN-BOND and BBDC will provide a platform to engage on clinical practice and research aimed at increasing quality of life for people with OI. The conference discusses topics like…

READ MORE
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…
READ MORE
Translate ยป