BBD Longitudinal Study of Osteogenesis Imperfecta

Part of paid clinical trials in Phoenix, Arizona.

Sponsor
Baylor College of Medicine
Study ID
NCT02432625
Status
Recruiting
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Conditions

  • Osteogenesis Imperfecta

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

Osteogenesis Imperfecta (OI) is a rare disorder of increased bone fragility characterized by fractures with minimal or absent trauma, dentinogenesis imperfecta (DI), and, in adult years, hearing loss. It is seen in both genders and all races. The clinical features of OI represent a continuum varying from perinatal lethality to individuals with severe skeletal deformities, mobility impairments, and very short stature to nearly asymptomatic individuals with a mild predisposition to fractures, normal stature, and normal lifespan. Fractures can occur in any bone, but are most common in the extremities. These disorders can be devastating and progressive and result in deformity, chronic pain, impaired function and loss of quality of life. The overall goal of this study is to answer specific question about the natural history of brittle bone diseases as defined by molecular etiology and to develop the foundation for prospective clinical studies.

Key Dates

Start date
Jun 1, 2015
Status verified
Aug 2025
Primary completion
Aug 31, 2030
Completion
Dec 31, 2031

Study Design

Enrollment
1,000 participants (estimated)

Primary Outcome Measure

Natural History of OI [ Time Frame: 10 years ]

Central Contacts

Locations (11)

FacilityCityStateZIPSite coordinators
Phoenix Children's HospitalPhoenixArizona85016
Isabella Wheeler
[email protected]
Pamela Smith, MD (PRINCIPAL_INVESTIGATOR)
University of California Los AngelesLos AngelesCalifornia90095
Deborah Krakow, MD (PRINCIPAL_INVESTIGATOR)
AI Dupont Hospital for ChildrenWilmingtonDelaware19803
Katie Richard
[email protected]
302.298.8367
Jeanne Franzone, MD (PRINCIPAL_INVESTIGATOR)
Children's National Medical CenterWashington D.C.District of Columbia21205
Andrew Pennington
[email protected]
202-476-5562
Laura Tosi, MD (PRINCIPAL_INVESTIGATOR)
University of South FloridaTampaFlorida33620
Elaine Deval
[email protected]
813-974-0104
Danielle Gomez, MD (PRINCIPAL_INVESTIGATOR)
Kennedy Krieger Institute / Hugo W. Moser Research InstituteBaltimoreMaryland21205
Libby Walker
[email protected]
Malinda Wu, MD (PRINCIPAL_INVESTIGATOR)
University of Nebraska Medical CenterOmahaNebraska68198
Sarah O'Neill
[email protected]
(402) 616-0562
Danita Velasco, MD (PRINCIPAL_INVESTIGATOR)
Hospital for Special SurgeryNew YorkNew York10021
Chloe DeRocher
[email protected]
Cathleen Raggio, MD (PRINCIPAL_INVESTIGATOR)
Oregon Health and Science UniversityPortlandOregon97239
Melanie Abrahamson
[email protected]
Eric Orwoll, MD (PRINCIPAL_INVESTIGATOR)
Baylor College of MedicineHoustonTexas77030
Dianne Nguyen
[email protected]
713-798-6694
V.Reid Sutton, MD (PRINCIPAL_INVESTIGATOR)
Shriners Hospital for Children, Chicago / Marquette UniversityMilwaukeeWisconsin53201
Angela Caudill, MPT
[email protected]
773-385-5868
Karen Kruger, PhD (PRINCIPAL_INVESTIGATOR)

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Phoenix Children's Hospital· Phoenix, AZUniversity of California Los Angeles· Los Angeles, CAAI Dupont Hospital for Children· Wilmington, DEChildren's National Medical Center· Washington D.C., DCUniversity of South Florida· Tampa, FLKennedy Krieger Institute / Hugo W. Moser Research Institute· Baltimore, MD

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