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My journey to initiate a study for determining the prevalence/incidence of Primary Sclerosing Cholangitis (""PSC"") in different race/ethnic groups through a retrospective study in Arizona

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This paper will chronicle my personal experience in trying to design and initiate a retrospective patient data study to determine the prevalence of Primary Sclerosing Cholangitis (“PSC”) in certain races/ethnic

This paper will chronicle my personal experience in trying to design and initiate a retrospective patient data study to determine the prevalence of Primary Sclerosing Cholangitis (“PSC”) in certain races/ethnic groups in Arizona. This experience will also be the basis for my proposed roadmap for a more successful future study.

My nearly 10 month thesis project of trying to complete a study yielded considerable ‘learning opportunities’ in large part due to my inexperience. I made numerous errors in sequencing tasks, grossly under-scoping elapsed time and hours for other tasks, completely overlooking other critical tasks, and being insensitive to how irrelevant I and my project were to the many professionals whose help I needed to complete the study. Based upon the knowledge I gained through this process, I will describe the design of a future study of retrospective patient data that will assess whether PSC patients in Phoenix, Arizona follow racial/ethnic trends. I chose Phoenix as an ideal location to perform this proposed study because of the diverse racial/ethnic population in the greater Phoenix area. The goal will be to obtain and review 20 years of retrospective patient data from three large hospital groups in Phoenix, identify the races/ethnicities of PSC patients, and quantify the prevalence and incidence of PSC in such races/ethnicities. The lack of IRB uniformity among the subject hospitals/clinics will pose a challenge, but a detailed outline of how to approach the IRB approval process and obtain PSC patient data from each institution is provided.

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  • 2016-12

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Protecting tribal nations through community controlled research: an analysis of established research protocols within Arizona tribes

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In the university setting, when a person wants to conduct research that deals with human subjects, they are required to receive the approval of their Institutional Review Board (IRB). This

In the university setting, when a person wants to conduct research that deals with human subjects, they are required to receive the approval of their Institutional Review Board (IRB). This process takes place to ensure the proposed research is ethical and poses minimal risks to the willing subject. In Indian Country, there is a growing trend where American Indian nations are taking control over regulating research that is conducted within their jurisdictional boundaries.

In my thesis, I discuss the historical background that has led to the IRBs academics are familiar within universities they see today. In addition, I discuss the body of literature that addresses IRBs, human subjects, and the debate on which research should or should not be regulated by universities. I will then, critically analyze the established research protocols that exist in Arizona American Indian tribes. I use Darrell Posey's (1996) idea of Community Controlled Research (CCR) as the framework for my analysis. CCR dictates the people of the community decide the ways in which research is conducted. The purpose of my research is to create recommendations that will assist and inform tribes how to either, strengthen their existing protocols, or create a research protocol that will promotes Community Controlled Research.

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  • 2015