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? Lupus Family Registry and Repository 2. Who can participate in this registry? People with SLE and RA. As well as healthy volunteers for comparisons. 3. Describe the history of this registry, including why it was formed. In the early 1990's, Dr John Harley at the Oklahoma Medical Research foundation was assembling multiplex families for SLE and caught the attention of the National Institute of Arthritis, musculoskeletal, and skin diseases in 1993 at an annual meeting at the American College of Rheumatology and that was the birthplace of what became Lupus multiplex registry and repository it led to funding in 1995. The Lupus foundation advocated for government funded studies to help better understand who can develop Lupus and how they're affected. The registry conducted the first comprehensive studies to measure how widespread lupus is in the U.S and to learn who is at risk and the affects on the lives of people affected. 4. Explain how this registry is funded. Government funded, fundraisers, donations, and corporate partners are some of the ways the Lupus Family registry is funded. 5. Why are registries important to the healthcare field? They provide reliable data in disease prevention, screening programs, treatment response, early diagnosis, disease control programs, best practices, support research, and therapeutic development. 6. What types of information and data are sent to this registry? Clinical information, demographics, lupus serology, and genotyping data from microsatellites, and singletinucleotide polymorphisms (SNP's) 7. What is secondary data and why is it important to the healthcare field in general? Secondary data is populationtilevel sources like health insurance claims, electronic health records, and health registry data. It's important because it improves the development of medications, safety monitoring, research, and improves patient care plans. 8. Explain the type of policy that should be put in place to protect the information in your chosen registry's system. HIPAA, encrypt all data at rest and in transit, keep all systems updated, educate employees, physical security controls, perform risk assessments, data usage controls, authentication (twotifactor).
References: https:ttttwww.ncbi.nlm.nih.govttpmcttarticlesttpmcfi448488 https:ttttwww.arbormetrix.comttblogttclinicaltidatatiregistrytibasics https:ttttwww.ncbi.nlm.nih.govttpmcttarticlesttpmc3307518 https:ttttwww.secondarytiusetihealthtidata.theodi.org https:ttttwww.prometheusresearch.comttensuringtithetisecuritytioftidatatiintiyourtihealthticareti registry https:ttttwww.lupus.orgttnationaltilupustipatienttiregistry