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Michigan Endocrine Database (MED)

The MED is a secure database of clinical information regarding clinical characteristics of adrenal cancer patients treated at University of Michigan.

Specific Aims and Objectives

  1. To design and implement a state-of-the-art computerized database to serve as both a specialized patient electronic medical record and a data tracking and registry instrument for rare endocrine problems and cancers.


  2. To design and implement a system for database maintenance with automatic and manual updates of patient management and outcome data utilizing existing UMMC resources fully.


  3. To design and implement a system for database access control and security. The ultimate goal of the security system would be to allow data review by academic physicians and researchers from outside the institution via the Internet while tightly protecting patient specific data.

Background and Significance

The University of Michigan enjoys a long history of excellence in the treatment of adrenal disorders and cancers as well as many other endocrine tumors of the thyroid, parathyroid, and pancreatic glands. Some of this experience has been incrementally recorded in case reports and series in the medical and surgical literature. However, there are large amounts of patient data that are not readily accessible or stored in any useful format. In fact, many details of treatment exist only in handwritten records or drawings. In treating patients with these rare tumors, the clinician must often depend on anecdotal data. Remembrances of “the last patient” often determine “state-of-the-art” treatment. Critical analysis of our treatment strategies is often not available.

The issues driving the creation of a database and registry reflect both institutional needs and larger issues regarding the practices of endocrinology, oncology, endocrine pathology, and endocrine surgery in general. Clinical research has been improving and evolving based on a perceived and real need to scrutinize and justify our collective beliefs in terms of evidence based medicine and legitimate outcomes measures. Also, there has been a quantum leap in database technology and medical informatics in the last 5 years. The first step in implementing effective and well-designed trials for the future is to adequately and thoroughly evaluate the complete experiences of the past and present. Utilizing current technology, it is expected that adequately organizing and analyzing the data of the past will allow us to improve the quality of our clinical research (both retrospective and prospective) and thus our clinical care. For each patient to come, we need to evaluate outcomes data as a basis for improved research in the future.

Another major issue is highlighted by the relative rarity of endocrine disorders and malignancies. Multicenter collaboration and data sharing will be very important in the future to facilitate clinical trials and also evaluate cost effectiveness and to generate of standardized practice recommendations. This sort of academic sharing among endocrine centers of excellence is crucial to the future progress in treatment of rare adrenal and other endocrine disorders and the UMEB system is expected to serve as an example and prototype for other multi-institutional data sharing efforts in the future.


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University of Michigan Comprehensive Cancer Center
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