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Achondroplasia Natural History Multicenter Clinical Study
Sponsor: Johns Hopkins University
Summary
The purpose of this study is to create an electronic registry to house phenotypic information from patients with achondroplasia. The initial focus of this registry will be to include U.S. patients with achondroplasia. Once populated, the collective data can be queried to pursue clinical research questions pertaining to health outcomes and treatment options for patients with this conditions. The registry is longitudinal in nature with the functionality to retrospectively enter patients' clinical data from the prenatal period up through the most recent encounter, with all intervening data entered in a chronologic fashion.
Official title: Registry of Patients With Bone Disorders
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
1500
Start Date
2016-04
Completion Date
2030-12-31
Last Updated
2026-04-01
Healthy Volunteers
No
Conditions
Locations (1)
Johns Hopkins University
Baltimore, Maryland, United States