What is a registry?
A registry is a centralized repository of information that can be used in research and/or quality improvement. This information may include patient data, clinical data, demographic information, and other types of data that can be used to improve patient care, develop a more comprehensive understanding of diseases, and further research. Primary uses of registries include:
- Quality Improvement and benchmarking
- Conducting research with the data
- Recruiting patients for clinical trials (These requests would not be included here – if your request is related to a clinical trial registry, please see the CTI website: https://uwclinicaltrials.org/)
How do I join an established registry?
To join an established registry, complete the Registry Request Form:
This form submits your information to the UW SMPH and UW Health registry teams to process your request. If more information is needed, a registry team will reach out to request more information. Requests will then be routed through UW SMPH or UW Health (or in some cases, jointly processed) for contract review and cybersecurity review.
Processing Times
A cybersecurity review is required for any registry request in which a Limited Data Set (LDS) or any Personal Health Information (PHI) will be uploaded to a registry. Review times will vary; you can help speed the process by asking the registry to provide you with documentation of its cybersecurity practices before you submit the Registry Request Form. Cybersecurity reviews and contract negotiations can happen in parallel, so do not wait for one to end before the other begins.
How do I create a registry?
Requests for creating or building a new internal registry please go to the following site: https://iit.med.wisc.edu/informatics-consult/ . Once you have determined with the informatics team that the registry is feasible, you can then begin work with the contracts team to determine what agreements need to be created.