The OIFE does not fundraise for research, but we promote research by doing the following:

  • Encouraging more research in OI on different aspects
  • Networking with researchers & clinicans worldwide
  • Trying to be informed on ongoing research in OI worldwide
  • Disseminating results from research through our communication channels
  • Assisting with recruitment through advertising studies in OIFE Magazine or social media
  • Endorsing specific studies in their application process
  • Partnering (on rare occasions) with specific studies with a broad international scope
Research

The OIFE attends scientific conferences on OI to network and interact with researchers and keep up to date. The most important ones being the scientific conferences taking place every 3rd year – like OIOslo2017 and OI2020 in Sheffield.

Ongoing research

The following bigger research studies are taking place internationally:

BPS-804 (Setrusumab)

The company Mereo Biopharma is investigating the drug setrusumab in adults and children with OI. BPS-804 (setrusumab) is a fully human monoclonal antibody designed to inhibit sclerostin, thereby improving bone strength and therefore reduce fractures in patients with osteogenesis imperfecta (OI) and improve quality of life. The study is international with research sites both in US, Canada and Europe.

Stem cells in OI

Boost Brittle Bones Before Birth (BOOSTB4) is a research study investigating the possibility of using stem cell therapy as treatment for severe OI. The treatment involves transplanting stem cells into the baby affected with OI during pregnancy or soon after birth. The main aim of the BOOSTB4 clinical trial is to test whether the treatment is safe and effective.

The TOPaZ Trial

TOPaZ is a randomised open-label clinical trial for people with Osteogenesis Imperfecta (OI). The study takes place in UK & Ireland and 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 Osteogenesis Imperfecta.

Contact registries

The OIFE is aware of the following contact registries or projects based on patient reported data recruiting at the moment:

Patient engagement

Sometimes the OIFE can assist with finding patient representatives for international research projects. We encourage you to get involved with us early if you are in need of patient representatives in your project. Preferably already in the planning phase. OIFE has also recruited patient representatives for regulatiry meetings at the European Medicines Agency (EMA) and the Mechanism of Coordinated Access to orphan medicinal products (MOCA).

But we have limited resources – because of the lack of educated patient experts in OI. This is why we have developed the project A stronger BOND between us.

Research grants

The OIFE does not provide research grants, but several of our member organizations do. In addition to checking out your national organization, we encourage you to check out the grants from:

See also grants from:

Professional networks

OIFE is deeply involved in the development and administration of the European Reference Network for rare bone disorders (ERN-BOND).

OIFE is also in touch with other research networks:

Industry

OIFE collaborates with different pharmaceutical companies and companies producing orthopaedic equipment. We are always looking for more potential partners and collaborators – please contact us if you are interested!

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