NCT02597881 Achondroplasia Natural History Multicenter Clinical Study
| NCT ID | NCT02597881 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Johns Hopkins University |
| Condition | Achondroplasia |
| Study Type | OBSERVATIONAL |
| Enrollment | 1,500 participants |
| Start Date | 2016-04 |
| Primary Completion | 2030-12-31 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 1,500 participants in total. It began in 2016-04 with a primary completion date of 2030-12-31.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief 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.
Eligibility Criteria
Inclusion Criteria: * Molecular or clinical diagnosis of achondroplasia (as confirmed by physical exam and/or radiograph review by the PI, one of the co-PIs or other qualified clinical geneticists) * Subjects must have been seen for a clinical genetics visit at Johns Hopkins, Alfred I. DuPont Hospital for Children, University of Wisconsin-Madison or University of Texas * Subjects may be active clinical patients at the above sites or no longer treated at a given site but with sufficient retrospective clinical data for extraction as determined by the PI or co-PIs Exclusion Criteria: * Skeletal dysplasia diagnosis other than heterozygous * Achondroplasia * There is no medical complication or condition which excludes a patient with achondroplasia
Contact & Investigator
Julie Hoover-Fong, MD,PhD
PRINCIPAL INVESTIGATOR
Johns Hopkins University
Frequently Asked Questions
Who can join the NCT02597881 clinical trial?
This trial is open to participants of all sexes, studying Achondroplasia. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT02597881 currently recruiting?
Yes, NCT02597881 is actively recruiting participants. Contact the research team at jhoover2@jhmi.edu for enrollment information.
Where is the NCT02597881 trial being conducted?
This trial is being conducted at Baltimore, United States.
Who is sponsoring the NCT02597881 clinical trial?
NCT02597881 is sponsored by Johns Hopkins University. The principal investigator is Julie Hoover-Fong, MD,PhD at Johns Hopkins University. The trial plans to enroll 1,500 participants.