Actively Recruiting
Achondroplasia Natural History Multicenter Clinical Study
Led by Johns Hopkins University · Updated on 2026-04-01
1500
Participants Needed
1
Research Sites
769 weeks
Total Duration
On this page
Sponsors
J
Johns Hopkins University
Lead Sponsor
U
University of Wisconsin, Madison
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Achondroplasia Natural History Multicenter Clinical Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Molecular or clinical diagnosis of achondroplasia confirmed by physical exam and/or radiograph review by qualified clinical geneticists
- Must have had a clinical genetics visit at Johns Hopkins, Alfred I. DuPont Hospital for Children, University of Wisconsin-Madison, or University of Texas
- May be current or past patients at these sites with sufficient retrospective clinical data for review
You will not qualify if you...
- Diagnosis of skeletal dysplasia other than heterozygous achondroplasia
- No medical complications or conditions exclude a patient with achondroplasia
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Johns Hopkins University
Baltimore, Maryland, United States, 21205
Actively Recruiting
Research Team
J
Julie Hoover-Fong, MD, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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