Finding studies
Finding studies
Take this into the appointment.
Saves the questions and what to expect into your notes, next to the visit they belong to.
Dianne Nguyen
CONTACT
Lead
Baylor College of Medicine
With
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). The research aims are: 1. To collect natural history data on all individuals enrolled in this longitudinal study. The cause of the brittle bone disease will be compared with things like severity, various features and response to treatments. 2. To determine how often people with type I OI have vertebral compression fractures of the spine. 3. To determine how often people with OI develop scoliosis (curvature of the spine). 4. To determine how often people with OI have problems with teeth alignment and how dental health impacts a person's quality of life. 5. To determine the effect of pregnancy in women with OI. There will be a total of 1000 people with OI in this study. Participants will be asked to come in every year if 17Y and younger or every other year if 18Y and older for a total of five years. The following information will be collected at the study visits: Birth History and past surgical history, Current medical history, Scoliosis evaluation, Walking ability Questionnaire, Dental Quality of Life Questionnaire, Scoliosis and fractures Quality of Life Questionnaires, Physical development evaluation, Medications Use The following tests will be performed: Physical exam, dental exam, lung function test, hearing test, mobility test. The following X-rays will be taken: DEXA scan, X-ray of the spine, X-ray of the jaw. Biospecimen (urine and blood) samples will be collected.
Age
Any age
Sex
ALL
Healthy volunteers
Not accepted
