In this final assignment, you will complete a thorough evaluation of your patient registry and complete a patient registry evaluation report that resembles a real-world evaluation.
The patient registry provides protection for human subjects’ patient privacy. For instance, it includes the random identification number instead of the patient’s name or ID number.
The patient registry should provide guaranteed informed consent to the participants, and they should be informed about the scope of the study and how it may affect them.
The patient registry promotes the protection of human subjects by not including the patient personal information, including names, social security numbers, physical addresses, and phone numbers, among others.
The registry needs to include a written plan for governance. The written plan indicates how the registry will manage complexities in the entire lifecycle starting from the initial planning to the results dissemination phase.
The sponsors need to set standards for data access or sharing. They can encourage the data-sharing process.