Medical Research

We have extensive experience in designing, developing, implementing and supporting sophisticated Patient Tracking systems for medical research facilities.

For example, we created an application for an
NIA-sponsored Alzheimer’s Disease Research Center (ADRC) that performs the following functions:

> Appointment Scheduling

Appointments are made and managed through this system. The application records rescheduling requests, as well as postponements, cancellations, and no shows. The system creates reminder lists of which patients are due/overdue for appointments; it can also generate confirmation and reminder letters to the patients. Both clinic and home visits are scheduled; procedure appointments (e.g., MRI / fMRI appointments) may also be scheduled.


> Patient Demographics

Each patient is represented in the system by a Subject Master record that contains extensive demographic, status (including latest conference diagnosis) and consent information. The Subject Master record “anchors” all other records pertaining to the patient.


> Visits
Each visit made by the patient is recorded and “attached” to the Subject Master record.

> Test Batteries

Associated with each visit are a number of tests and examinations – some or all of which may be conducted at any given visit. 17 forms, representing some 22 tests, examinations, histories and diagnosis capture points are available at each visit. The majority of the forms currently in use are compliant with the Uniform Data Set (UDS) forms recently developed by the National Alzheimer’s Coordinating Center (NACC); the remainder are currently being modified to be compliant with the UDS standard. Once this process is complete, the system will be able to generate UDS records for uploading to the national ADRC data repository.


> Autopsies
An extensive neuropathological workup is done and recorded for those patients who go to autopsy under the auspices of the ADRC. This workup is used to produce the records for uploading to the NACC Neuropath Data repository.


> Standard Queries and Reports

Included in the application are a number of “standard” queries and reports that the ADRC uses to manage the database, as well as to generate some basic statistics about the study population. The “standard” set encompasses a variety of housekeeping and data diagnostic chores (e.g., finding patients who are missing key data items), as well as demographic and diagnostic grouping reports. We have also constructed a “sandbox” for the ADRC – a database that allows researchers read-only access to the data in which those researchers may write their own queries and reports. We are in the process of building a “blind” version of the sandbox – in which researchers will be able to have read-only access to the demographic, visit and test/exam data without having access to personal identification information.


For additional information and references, please contact us by email or by phone.

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D. H. Keene Associates, Inc.
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Marlborough, MA 01752

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