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 18 people took part.

The agenda included:  

  • Status on Key4OI by Dagmar Mekking
  • Information on EuRRBone – Natasha Appelman-Dijkstra
  • Other news from OIFE – Ingunn Westerheim

Standard set of outcome measures

Dagmar Mekking from Care4BrittleBones gave a short introduction about the project Key4OI, which is a standard set of outcome measures for osteogenesis imperfecta. The standard set has been developed through a process involving an international group of experts and focus groups, where children and adults have provided their input from the patient perspective.

 

Information on EuRR-Bone

Natasha Appelman-Dijkstra, from Leiden University, gave a presentation on the brand new EuRR-Bone registry, while being stuck in traffic. Talk about passion for OI! EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI in collaboration with the EuRRECa project (European Registries for Rare Endocrine Conditions).

Better treatment & follow up of people with OI

The introductions were followed by questions from the participants and a very constructive discussions which included questions on:

  • How we can develop better guidelines for OI
  • How the patients can help the professionals to provide data
  • How different registries in different countries can work together
  • How patient organizations and other stakeholder can come together to work for more standardized and regular follow-up of people with OI in all age groups

We will follow up the many important questions and comments in further meetings after the summer holidays.

Thank you to all the people who contributed!

What is Key4OI?

Still not sure about what Key4OI is? Watch the video below, made by Care4BrittleBones which explains how Key4OI could be used as a tool to develop more standardized healthcare for people with OI.