Month: October 2023

Update from Dr. Alison Skrinar on the Ultragenyx trials, Orbit and Cosmic

Posted on by OI Foundation

The OI Foundation recently shared an announcement from Ultragenyx which shared Interim data from the Phase 2 portion of their Orbit study. This data showed that treatment with setrusumab reduced incidence of fractures in patients with OI by 67% following at least 6 months of treatment and demonstrated improvements in lumbar spine bone mineral density (BMD). CLICK HERE TO READ THE FULL PRESS RELEASE

Ultragenyx is now enrolling participants for the Phase III of this trial. The trials are open to children with Types I, III, and IV OI and have sites around the country.

Dr. Alison Skrinar (Ultragenyx) joined OIF Board Member Dr. Michelle Fynan to discuss setrusumab and the clinical trial process in a video for the OI community. Please take a minute to watch this video at https://www.youtube.com/watch?v=kUYp3REcO2g

Somewhere to Go

Posted on by OI Foundation
On October 19-20, the OI Foundation hosted a meeting titled “Somewhere to Go for Adults with Childhood-Onset Rare Diseases: A Conversation About How We Can Fill Gaps in Care.”
 
Attendees worked to address the issues adult patients with a rare disease face as they navigate the health care system. Topics covered during the meeting included examining current rare disease care infrastructure; the role of technology in providing quality care; payment model issues; patient engagement issues and current care models including centers of excellence and existing consortium and network models.
 
We are so grateful to all who attended and participated!

Support the OIF While Shopping Walmart.com

Posted on by OI Foundation

Support the OIF While Shopping Walmart.com on Black Friday and Cyber Monday!

Walmart recently launched Walmart Spark Good Round Up where customers can round up their purchases to the nearest dollar and donate the change to their favorite charity. We would love for you to choose us as your charity to receive these donations every time you shop on Walmart.com. Click here to set the OI Foundation as your favorite charity!

Participate in the OI Wellbeing Study

Posted on by OI Foundation

Participate in the OI Wellbeing Study

Baylor College of Medicine is conducting this OI Wellbeing Study as a part of the Brittle Bone Disorders Consortium which aims to improve the lives of people with Osteogenesis Imperfecta.
This study addresses an under-researched aspect of health critical to the wellbeing of the OI community, namely psychological health. Participants will meet with a researcher over a secure teleconference platform for about 1 hour and complete a series of questionnaires about mental health, physical health, quality of life, social wellbeing, and experience with health care professionals. Participants are compensated $50.

This information may help develop psychological interventions personalized for people with OI. Please share information about this study with any adult with OI that you believe may be interested in participating.

If you have any questions about the study or are considering participating, please email OIWellbeing@bcm.edu or call (713) 798-0117.

OI Study: Evidera

Posted on by OI Foundation

Evidera, a company specialized in patient-centered outcomes research, are currently looking for individuals living with osteogenesis imperfecta (OI).

Please take a moment to read a message from Evidera below:

We are conducting a study to understand patients’ experiences of living with osteogenesis imperfecta (OI) and how symptoms, such as pain and fatigue, affect their everyday lives. This information will inform future clinical trials to ensure relevant patient experiences are captured.  The study does not involve treatments; we are only interested in opinions.

Those interested will be invited to take part in two 60 minute online or telephone qualitative interviews. We very much value and respect your time, so you will be compensated with a total amount of $250 ($125 per interview). Compensation will be placed onto an e-gift card.

If you have been diagnosed with OI or are the parent/caregiver of a child (8-17 years old) with OI and would like more information about the study, please contact Katherine Kirk via Katherine.kirk@evidera.com or +1 301 312 5386.

Exciting new data update from Ultragenyx!

Posted on by OI Foundation
Today, Ultragenyx announced Interim data from the Phase 2 portion of the Orbit study, which showed that treatment with setrusumab reduced incidence of fractures in patients with OI by 67% following at least 6 months of treatment and demonstrated improvements in lumbar spine bone mineral density (BMD).
 
 
To learn more about Ultragenyx research, visit https://www.ultraclinicaltrials.com/OI or reach out via email, OIStudyInfo@ultragenyx.com.

What We’re Learning from a Natural History Study

Posted on by OI Foundation

From the BBDC: Osteogenesis Imperfecta Over Time: What We’re Learning from a Natural History Study
To learn more about the natural history of individuals with osteogenesis imperfecta (OI), the Brittle Bone Disorders Consortium (BBDC) is conducting a “Longitudinal Study of Osteogenesis Imperfecta.” The team is performing a long-term follow-up of a large group of people with OI to investigate vertebral compression fractures of the spine, scoliosis (curvature of the spine), dental health, and more.

Click here to learn more!