Achondroplasia Natural History Multicenter Clinical Study (NCT02597881)
Registry of Patients With Bone Disorders
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Johns Hopkins University — Baltimore, Maryland
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (1 Sites)
- Johns Hopkins University — Baltimore, Maryland
📞 Contact the Study Coordinator
Phone: (410) 614-0977
Email: jhoover2@jhmi.edu
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Achondroplasia
- A Study to Evaluate Long-Term Safety, Tolerability, & Efficacy of BMN 111 in Children With Achondroplasia (ACH) — Oakland, California
- An Extension Study to Evaluate Safety and Efficacy of BMN 111 in Children With Achondroplasia — Oakland, California
- An Extension Study to Evaluate the Efficacy and Safety of BMN 111 in Children With Achondroplasia — Oakland, California
- Interventional Study of Infigratinib in Children < 3 Years Old With Achondroplasia (ACH) — Oakland, California
- A Study of TYRA-300 in Children With Achondroplasia: BEACH301 — Torrance, California
- VIrtual STudy in Achondroplasia for the US (VISTA) — Oakland, California
Explore by condition: All Achondroplasia clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.