For Healthcare Professionals
COVID-19 UPDATE: We are still accepting cases at this time. Please contact our Program Coordinator, Hannah Ebbers, before submitting your case at [email protected].
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)
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.