NIH Seeking Volunteers for Osteogenesis Imperfecta Study
The National Institutes of Health (NIH) is seeking children and adults with osteogenesis imperfect (OI) to join a study to learn more about the natural history of OI from childhood to adulthood and identify genes that play a role in the disease. This study is a part of the NIH Osteogenesis Imperfecta Translational Research Program, led by physician scientist, Joan Marini, M.D., Ph.D. The program has provided comprehensive care for children with OI for more than 30 years, while conducting clinical and laboratory research.
Eligible participants are:
- Children with OI up to the age of 12
- People with OI of any age who were previously seen at NIH as children
Study procedures may include:
- Children will visit every 3 to 4 months, up to age 5, then every 6 to 12 months.
- Adult participants will visit every 6 to 12 months.
- Visits may last a few days.
- Participants may have DXA bone density, X-rays, heart and hearing tests, dental exam, rehabilitation and physical therapy evaluations, pulmonary function tests, CT imaging and MRI of the head, neck and lungs, kidney ultrasound, blood work, and genetic testing.
- Clinical results can be provided to participant.
- No cost for study-related tests or procedures.
- Travel within the U.S. and accommodations will be reimbursed.
Location: The study takes place at the NIH Clinical Center, America's Research Hospital in Bethesda, MD in the Washington, DC metro area.
For more information:
NIH Clinical Center Office of Patient Recruitment
1-800-411-1222 (refer to study #18-CH-0120)
TTY for the deaf or hard of hearing: 1-866-411-1010
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Or go online:
Department of Health and Human Services
National Institutes of Health Clinical Center (CC)
National Institute of Child Health and Human Development (NICHD)