An Important Part of the OI Foundation Research Program

 

Dr. Brendan Lee

The Brittle Bone Disorders Consortium is part of the National Institutes of Health Rare Diseases Clinical Research Network. It is a multi-center program that focuses on understanding and providing better treatment options for all types of osteogenesis imperfecta (OI). In addition, the consortium will sponsor a state of the art Contact Registry for People with OI and implement training programs for physicians and scientists.

What this Means to People with OI

This program will speed up the pace of research and put useful information into practice much quicker than otherwise possible by:

  • Using the skills of experienced researchers from many institutions
  • Creating access to research centers closer to where people live; making participation easier
  • Expanding educational opportunities for healthcare providers

Consortium Members

The Brittle Bone Disorders Consortium is a group of physicians, researchers and educators who are focused on learning more about osteogenesis imperfecta and developing new and better treatments to improve the care of people with OI.

  • Baylor College of Medicine, Houston, TX
  • Shriners Hospital for Children Montreal, Canada
  • Oregon Health and Science University, Portland, OR
  • University of California in Los Angeles
  • Kennedy Krieger Institute, Baltimore, MD
  • Children’s National Health System, Washington, DC
  • Hospital for Special Surgery, New York, NY
  • Shriners Hospital for Children, Chicago, IL and Marquette University, Milwaukee, WI
  • Children’s Hospital and Medical Center/University of Nebraska Medical Center, Omaha, NE
  • The University of South Florida, Tampa, FL
  • University of Washington, Seattle, WA
  • Nemours / Alfred I duPont Hospital for Children, Wilmington, Delaware
  • Shriners Hospital for Children, Tampa, Florida
  • OI Foundation, Gaithersburg, MD

Consortium Research Studies

  • Extending the Longitudinal Study of OI (begun in the OI Foundation’s Linked Clinical Research Center program). This study is important to accurately describe the different types of OI and how they may change and as people grow up and get older. This study is recruiting participants – see Natural History Study (or Longitudinal Study) under Current StudiesThe Longitudinal Study of OI focuses on:
    • Phase 1a/1b clinical trial of a new drug (anti-TGF-beta) to treat severe OI
    • Spine study into the effects of scoliosis and vertebral compression on lung function
    • Pregnancy outcomes in women with OI
    • Dental study of craniofacial and dental deformities seen in severe OI and effect on quality of life
    • Quality of Life study utilizing and validating sections of the NIH-funded PROMIS system
    • Biomarker study looking at collagen cross-linking

Details for each study will be posted when they are open for recruiting participants.

Contact Registry for People with OI

This Consortium project is a state of the art registry of contact information for children and adults who have OI. It makes it possible to do the following:

  • Expand knowledge about OI through the information provided by registry members. (View the BBDC Data Use Policy)
  • Reach out quickly to people with OI who are eligible for a new study
  • Update registry members on study results and other news.

The contact registry is temporarily unavailable. Please check back soon.

 

Medical Education Opportunities

The Brittle Bone Disorders Consortium, with the assistance of the OI Foundation, will work to bring up-to-date information about caring for people with OI to physicians and other health care providers:

  • Workshops at professional meetings
  • Continuing Medical Education Course
  • Podcasts
  • Toolkit for Medical Professionals, on the OIF Website
  • Medical Professional Electronic Newsletter

Fellowship Opportunities

Information about fellowships for young investigators is posted under OIF Research Grants 

Check out the Brittle Bone Disorders Consortium’s (BBDC) first newsletter! Click Here to read about the BBDC’s partnership with the OIF, a message from the first BBDC participant, current studies, and more.

 

Last Updated October 2017