Retinal Dystrophy Patient Database
Department of Ophthalmology

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Project Background

Retinitis pigmentosa is a progressive degeneration of the retina (part of the eye) which affects night vision and peripheral vision. Professor Michael Marmor, former chairman of the department of Ophthalmology, who has seen many patients with this relatively rare retinal dystrophy over the years, now feels that a cure to this condition, previously considered untreatable, may be discovered fairly soon. With this in mind Prof. Marmor has been compiling a list of patients with this disease in order to contact them should a cure be discovered. Looking for help in bringing his patient database into HIPAA compliance, Prof. Marmor commissioned the Retinal Dystrophy Patient Database.

The data entry component of the system consists of two pages, one to locate patient records and one to enter or modify a patient record. There is also a read-only version of the patient record page for use when browsing rather than editting. The patient population tracked by this application consists of three distinct groups, one with retinitis, another with macular dystrophy, an hereditary condition in which there is a degeneration of the retinal receptors in the region of the macula, and a third population who have other related retinal degenerations or dystrophies. A query-by-example page permits rapid construction of arbitrarily complex queries.

There is also an administrative section to the application that is used to maintain the structured data used in the patient record. The centerpiece of this section is a duplicate patient management page. About 1% of the legacy patient records may be duplicated; from the patient identity management page you can quickly compare two similar records and determine whether one should be deleted or both flagged as distinct from each other.

In the interests of ensuring high quality data the application uses checkboxes and dropdown lists of choices throughout the data entry pages. The data is housed in IRT's fully HIPAA compliant secure data storage facility in an Oracle database with comprehensive relational integrity constraints as an additional guarantee of high data quality.