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Terms and Conditions of Use Terms and Conditions of Use of the International Clubfoot Registry (ICR)
1. The ICR is a resource to advance the treatment of clubfoot and is available free of charge to doctors using the Ponseti Method around the world.
2. The ICR is managed by the University of Iowa's Center for Bioinformatics and Computational Biology in collaboration with the Ponseti International Association.
3. All Registry Portals are created by the University of Iowa ICR team.
4. The ICR complies with US standards for Privacy and Security of Electronic Health Information: Privacy and Security document
5. Users are required to ask each parent for consent to enter his/her child's information into the ICR. Users are required to select YES to the consent question before the database will accept data.
6. Although multiple hospitals may use the database, each user can only see patient records associated with his or her hospital.
7. Once a patient record is established, any registered user from that hospital can add visit updates, to accommodate the fact that a patient may not always see the same doctor.
8. Only registered and approved users from each hospital, country/program administrators, and ICR administrators have access to the data on a need-to-know basis.
9. For any outside organization or individual wishing to access patient data for research or other purposes, written permission must be obtained from the treating doctor(s), in which case all Institutional Review Board (IRB) requirements will need to be met.
10. If a doctor wishes to stop using the database for any reason, he or she can obtain a copy of all the records he or she has entered.
11. Technical support is provided by the University of Iowa at clubfoot@eng.uiowa.edu.