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.


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 through 16 OI focus groups. Their input has been carefully analysed and discussed by the international Key4OI Expert group in bi-weekly meetings and several so called Delphi surveys. And now it is here: The Core Outcome set for multidisciplinary care and research. Check out the animated video summarising Key4OI here:

In 2020 health care providers in six countries will pilot Key4OI. It will then become available for everyone in 2021. The aspiration of Care4BrittleBones is to use Key4OI as a platform for learning about OI together better and faster, eventually supported through big data. Watch that – very exciting – space!

If you are interested to be more closely involved with Key4OI and consider using it in 2021 and beyond, you can become part of the Key4OI – Affiliates group, who is invited for quarterly videoconferences.

To join this group, please email Dagmar Mekking at: dagmar.mekking@care4brittlebones.org


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 surgery and rehabilitation, medical treatment options including stem cell treatment and gene therapy, diagnosis and psychosocial aspects like fatigue, pain and mental health. The conference takes a multidisciplinary approach and is focused on children as well as adults with OI. Key questions are: How do we measure outcomes in people with OI and what should the standard of good clinical care be in these areas?

This conference is for you, if you are:

  • a health care provider or allied health care professional (Genetics, Internists, Pediatricians, Endocrinologists, Rheumatologists, Radiologists, Nephrologists, Orthopedic Surgeons, Nurses / Physician Assistants, Physiotherapists, Occupational therapists, Psychologists, Dentists…)
    a person with OI or closely related to someone with OI. We will do our very best to ensure we can accommodate the needs of every person with OI. Please be in touch to learn about accessible rooms and daily living support. A helpdesk has been established just for you (OI@qualityoflife4oi.org)! Don’t hesitate to ask!
  • an industry representative interested in OI (pharmaceutical or other industry)
  • an other representative, eg from EMA (European Medicines Agency), ERN-BOND, BBDC etc.

For more information and registration, go to www.qualityoflife4oi.org.

Contact: dagmar.mekking@care4brittlebones.org


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 need standards & guidelines. Come to Amsterdam in November and help us develop some recommendations on this! Dr. Frank Rauch (photo) is the programme chair of the Quality of Life 4 OI-conference and will be there together with many others experts in the field, like Antonella Forlino (photo).

Register at: www.qualityoflife4oi.org

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