Heather Arsenault HIM 220 -- Healthcare Data Management 22EW3 Due Date: 2/13/22 Grade 30/30 HIM 220 Module Six Worksheet
Visit the National Institutes of Health's registry list (scroll down to the list area in the middle of the page to access the registries) and choose one from the list. Conduct independent research on the registry of your choice and address the following based on your findings:
1. Which registry did you choose? Global PraderfiWilli Syndrome Registry
2. Who can participate in this registry? This registry is open to all individuals with PWS. It can be completed by the parent or guardian of the person with PWS, or by the person with PWS, if they are able.
3. Describe the history of this registry, including why it was formed. The Global PWS Registry is a comprehensive and secure database, compliant with U.s. Health information privacy laws and FDA regulations. It was developed in 2015 to accelerate research and cures for the rare disease Pws. It works by creating a platform for patients around the world to share information about PWS on developmental history, medical complications, and quality of life (FPWR, 2020).
4. Explain how this registry is funded. The PWS registry is funded by the Foundation for PraderfiWilli Research Foundation, which is funded through donations and fundraising.
5. Why are registries important to the healthcare field? Registries are important to the healthcare field because they can be used to improve diagnostics, procedures, and treatment of patients with a specific diagnosis. With a collection of information about patients with a specific diagnosis and their treatments, it helps medical professionals improve the qualityfiofficare future patients receive.
6. What types of information and data are sent to this registry? The registry requires demographic information and surveys covering general medical history, systemfispecific clinical complications, diet, medication, and supplement use, as well as behavior, mental health, and social information. Information is primarily parent/caregiver entered.
7. What is secondary data and why is it important to the healthcare field in general? Using existing data generated by large government Institutions, healthcare facilities etc. as part of organizational record keeping. The data is then extracted from more varied datafiles (Research Guides: Public Health Research Guide: Primary & Secondary Data Definitions, 2022). It is important because medical professionals can use this data to research treatments from previous patients to see which ones worked and which didn't. This, in turn, can improve the quality of patient care.
Heather Arsenault HIM 220 - Healthcare Data Management 22EW3 Due Date: 2/13/22 Grade 30/30
8. Explain the type of policy that should be put in place to protect the information in your chosen registry's system. There should be a policy to protect the confidentiality of the patient's personal information in the registry while allowing the registry access to the necessary information. The HIPAA laws allow a HcO to use or disclose patient information for registry purposes under specific conditions while still maintaining patient confidentiality.
RESOURCES
F. (2020). The Global PWS Registry: Empowering Families, Advan