Move OI Research Forward – Participate in OI Studies
A clinical study is research that involves human volunteers and seeks to answer questions that will add to our knowledge about a medical condition or how to treat it. Learn more about types of studies, how they are organized, and what to consider before participating by reviewing the OIF’s What You Need To Know About Clinical Trials factsheet.
All current OI Studies are listed on the OIF’s Current Studies webpage at www.oif.org/currentstudies.
The OI Foundation would like to bring your attention to current OI research studies:
ORBIT Study
The Ultragenyx ORBIT study is investigating a new treatment in pediatric and young adults with OI Types I, III, or IV. You can find more information on the study flyer here.
If you are interested in learning more about this trial or would like to see if you are able to participate, please reach out to Erin at trialrecruitment@ultragenyx.com
OI Wellbeing Study
OI Community Members Ages 13-17: Participate in the OI Wellbeing Study!
In partnership with the OIF, researchers at Baylor College of Medicine are conducting a study to better understand the mental health and pain experiences of the OI community. You will have the opportunity to share your individual experiences and discuss what you think could be improved for people living with OI. Your feedback will inform future research in this area.
Taking part in the study includes participating in an approximately one-hour online interview and the completion of a questionnaire, for which you will be compensated $50. This study is for US residents only. If you or your child are interested in participating in the study, please contact the study team at OIWellbeing@bcm.edu for more information.
Use of clear aligners for the treatment of dental malocclusion in individuals with Osteogenesis Imperfecta Types III and IV
The purpose of this study is to determine if it is safe to use Invisalign clear aligners in correcting the misalignment of teeth in people with OI. Clear aligners are transparent plastic trays that are designed to fit over your teeth. With each new tray, teeth are moved a little at a time until they reach the desired position.
For more information, or to see if you are eligible to participate, please contact: Dianne Nguyen, BBDC Project Manager at (713)798-6694 or diannen@bcm.edu
Longitudinal Study of Osteogenesis Imperfecta
The Brittle Bone Disorders Consortium is currently recruiting for a Longitudinal Study of Osteogenesis Imperfecta. The purpose of this natural history study is to perform a long-term follow-up of a large group of people with osteogenesis imperfecta (OI). We will collect information including medical history, number of broken bones, surgeries done, medications taken, ability to walk, pain, lung function and breathing, hearing, and bone mineral density.
The overall goal is to improve the health and quality of life of people with OI. Click here to learn more about this study.
Join the OI Registry! The easiest way to learn more about current and upcoming clinical studies is to enroll in the OI Registry. Once you enter your information into this registry, the OIF or researchers will have access to your deidentified information and may ask you to participate in OI surveys or studies. Click here to join now.
