OI:Linked Clinical Research Centers Project Seeks Participants

ALT TITLE:Linked Clinical Research Centers Project Seeks Participants

06.30.2009— We are conducting a new research initiative called “The Longitudinal Study of Osteogenesis Imperfecta” (IRB Protocol #NA_00024966). This will be the first study of its kind—where 40 patients (500 total over 5 years) with osteogenesis imperfecta (OI) will participate from the Kennedy Krieger Institute (Baltimore, MD), Oregon Health Sciences University (Portland, Oregon), or Baylor College of Medicine (Houston, TX) and be followed for at least 5 years. If you join the study, your bone density scans, x-rays, lab tests, fracture history, nutritional intake, drug history, etc will be collected and entered into a centralized database. This will help clinical researchers follow how certain factors like drug administration or bone density may affect individuals with OI over a long period of time.

This is a study that is open to patients within the OI Clinics listed above, but there is no requirement for any patient to join. If you do not want to be part of this research, it will have no bearing on your care at all.

If you are interested in being part of this research study or would like to know more, please contact Dr. Jay Shapiro, Principal Investigator, at 443-923-2710 or Pamela Melvin at 443-923-2707.

Johns Hopkins Medicine

APPROVED JULY 30, 2009

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