• UCLA Health
  • myUCLAhealth
  • School of Medicine
International Skeletal Dysplasia Registry (ISDR)

UCLA International Skeletal Dysplasia Registry (ISDR)

International Skeletal Dysplasia Registry (ISDR)
  • Back to Ortho Surgery
  • About the ISDR
  • For Healthcare Professionals
    • Publications
    • Submission Instruction Sheets
    • Forms
  • Collaborate with the ISDR
    • Donate Now (Support Skeletal Dysplasia Research)
  • For Patients & Families
  • Shipping Information
  • Expert Team
  • UCLA Health
  • myUCLAhealth
  • School of Medicine

UCLA International Skeletal Dysplasia Registry (ISDR)

For Healthcare Professionals

For Healthcare Professionals

For Healthcare Professionals

  • Publications
  • Submission Instruction Sheets
  • Forms
  • Publications
  • Submission Instruction Sheets
  • Forms
  1. Home
  2. International Skeletal Dysplasia Registry (ISDR)
  3. For Healthcare Professionals

For Healthcare Professionals

Share this

COVID-19 UPDATE: We are still accepting cases at this time. Please contact our Program Coordinator, Hannah Ebbers, before submitting your case at HEbbers@mednet.ucla.edu.

How to Submit a Case

The ISDR invites health care professionals to submit their skeletal dysplasia cases to our Registry. We have long-standing research collaborations with members of the medical and scientific communities. Please note that we are not licensed to carry out clinical testing, all samples submitted to us are used for research only.

To Submit a Case from Inside the U.S. (Domestic)

  • Follow instructions on Submission Instruction Sheets 

 To Submit a Case from Outside the U.S. (International)

If your institution holds a Federalwide Assurance (FWA) number and your research operates under the guidance of an Institutional Review Board or Ethics Committee, you may apply to become a research collaborator.

  • Contact our Study Coordinator, Samantha Alon Najemy.  You will need to provide your FWA number and an IRB approval letter.  We will submit your information to our Skeletal Dysplasia team and our IRB for approval.  This may take 1-2 months.  You will only have to go through this process at the time you submit your FIRST case to the Registry.
  • Once the approval is complete, please submit materials as outlined on the Submission Instruction sheet specific to your type of case.
  • The ISDR Consent Forms are NOT needed since you will be obtaining patient consent under your own IRB approved research protocol.
Like Us on Facebook Follow Us on Twitter Subscribe to Our Videos on YouTube Follow us on Instagram Connect with Us on LinkedIn Follow us on Pinterest
UCLA Health hospitals ranked best hospitals by U.S. News & World Report
  • UCLA Health
  • School of Medicine
  • School of Nursing
  • UCLA Campus
  • Directory
  • Newsroom
  • Subscribe
  • Patient Stories
  • Giving
  • Careers
  • Volunteer
  • International Services 
  • Privacy Practices
  • Nondiscrimination
  • Billing
  • Health Plans
  • Emergency Preparedness
  • Report Broken Links
  • Terms of Use
  • 1-310-825-2631
  • Maps & Directions
  • Contact Us
  • Your Feedback
  • Report Misconduct
  • Sitemap
Like Us on Facebook Follow Us on Twitter Subscribe to Our Videos on YouTube Follow us on Instagram Connect with Us on LinkedIn Follow us on Pinterest

Sign in to myUCLAhealth