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Achondroplasia Natural History Multicenter Clinical Study

NCT02597881 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 1500

Last updated 2026-04-01

No results posted yet for this study

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.

Conditions

Sponsors & Collaborators

  • University of Wisconsin, Madison

    collaborator OTHER

  • Alfred I. duPont Hospital for Children

    collaborator OTHER

  • University of Texas

    collaborator OTHER

  • BioMarin Pharmaceutical

    collaborator INDUSTRY

  • Greenberg Center for Skeletal Dysplasias

    collaborator UNKNOWN

  • Johns Hopkins University

    lead OTHER

Principal Investigators

  • Julie Hoover-Fong, MD,PhD · Johns Hopkins University

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2016-04-30
Primary Completion
2030-12-31
Completion
2030-12-31

Countries

  • United States

Study Locations

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Entities

Diseases
Companies

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02597881 on ClinicalTrials.gov