Condition: Achondroplasia · Sponsor: Johns Hopkins University
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.
This description comes directly from the study's public registry record.
Julie Hoover-Fong, MD, PhD · 4106140977 · jhoover2@jhmi.edu
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| Johns Hopkins University | Baltimore, Maryland, United States | Recruiting |
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Source record: clinicaltrials.gov/study/NCT02597881