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Academia and the Profession |

Applying World Wide Web Technology to the Study of Patients with Rare Diseases

Piet C. de Groen, MD; Jon A. Barry, BA, BS; and William J. Schaller, BA
[+] Article and Author Information

From Mayo Medical School, Clinic, and Foundation, Rochester, Minnesota. Requests for Reprints: Piet C. de Groen, MD, Division of Gastroenterology, Mayo Clinic and Foundation, 200 First Street SW, Rochester, MN 55905. Current Author Addresses: Dr. de Groen: Division of Gastroenterology, Mayo Clinic and Foundation, 200 First Street SW, Rochester, MN 55905.


Copyright ©2004 by the American College of Physicians


Ann Intern Med. 1998;129(2):107-113. doi:10.7326/0003-4819-129-2-199807150-00009
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Randomized, controlled trials of sporadic diseases are rarely conducted.Recent developments in communication technology, particularly the World Wide Web, allow efficient dissemination and exchange of information. However, software for the identification of patients with a rare disease and subsequent data entry and analysis in a secure Web database are currently not available.

To study cholangiocarcinoma, a rare cancer of the bile ducts, we developed a computerized disease tracing system coupled with a database accessible on the Web.The tracing system scans computerized information systems on a daily basis and forwards demographic information on patients with bile duct abnormalities to an electronic mail-box. If informed consent is given, the patient's demographic and preexisting medical information available in medical database servers are electronically forwarded to a UNIX research database. Information from further patient–physician interactions and procedures is also entered into this database. The database is equipped with a Web user interface that allows data entry from various platforms (PC-compatible, Macintosh, and UNIX workstations) anywhere inside or outside our institution. To ensure patient confidentiality and data security, the database includes all security measures required for electronic medical records. The combination of a Web-based disease tracing system and a database has broad applications, particularly for the integration of clinical research within clinical practice and for the coordination of multicenter trials.

Figures

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Figure 1.
Process for entering patients into the computerized tracing system.

Day 1: A patient is seen by a physician, who completes a billing record form. On the back of the billing record, the physician checks a box to indicate a diagnosis of biliary tree disease. The completed billing record is sent to the business office, where data are entered into the billing records database. Night 1: A batch program searches the business office database for patients seen and billed the previous day for diseases of the biliary tree, and it forwards demographic data of these patients to the “Candidates” section of the database. The database sorts new patients from already known patients. Day 2: The study coordinator checks the “Candidates” section of the database, contacts the physician of the potential study candidate, and requests informed consent for enrollment into the cholangiocarcinoma database.

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Figure 2.
The World Wide Web page for candidates for the cholangiocarcinoma database.

The candidate Web page consists of two main sections. The top section shows entry fields for “Patient Status,” “Sort by” options, and “# Patients,” as well as a “Diagnosis Selection” scrolling field. Patient status is determined from the most recent billing record information in addition to the database. Sorting is possible by Mayo Clinic number (MC#), location of the patient within in the clinic (Location), date seen (Date), diagnosis of interest (Diagnosis), and patient name (Name). After the choices are entered, the sort is executed by a click on the “Display” button. Sorting can also be done on all patients or on a subset of patients with a specific ICD-9 (International Classification of Diseases, 9th Revision) code. The total number of patients found (# Patients) is shown on the right in the top section. The lower frame shows the actual patients (MC# Name), the scheduled date and location of service (Service Date Location), the physician and his or her pager number (Physician Pager #), the ICD-9 code and its rank (Dx Rank), and the current status of the patient within the database (Status). Up to three diagnoses can be marked per visit on the billing record. When the arrow is placed over the diagnosis code (000.0), the actual diagnosis is displayed at the bottom of the browser window (not shown). The status of the patient can be changed by clicking on the “Status” button and then the “Save” button; choosing “Register” enters the patient into the database.

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Figure 3.
Schema of database.

The database was designed according to this schema, which shows possible interactions between patients with cholangiocarcinoma and physicians. The left column shows patient registration, history, and examination. The various diagnostic tests constitute most of the schema (second column). A final diagnosis (third column) is made before therapy (fourth column) is started. Chemo-R = chemotherapy; CT = computed tomography; DIA = digital image analysis; Dx = diagnosis; ERCP = endoscopic retrograde cholangiopancreatography; GI = gastroenterology; MR = magnetic resonance imaging; Nuclear Med = nuclear medicine; Onc = oncology; PSC = primary sclerosing cholangitis; PTC = percutaneous transhepatic cholangiography; Rad Onc = radiation oncology; Radiation-R = radiation therapy; Surg = surgery; US = ultrasonography.

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Figure 4.
Examples of a World Wide Web page, showing “autoadvance” and page “flipping” for the arteriogram template. Top.Bottom.top lefttop rightbottom leftbottom right

On each page, two frames are shown. The top frame contains the study number (964202); the study name (Cholangiocarcinoma Initiative); the Mayo logo; an entry field for the patient number (Patient:); a “Set Patient” button to choose a patient; a “Reset” button to reset the patient number; a “Logout” button to disconnect the user from the database; a “Lookup” link to show, in the second frame, a table from which patients can be chosen; and a “(View)” link to show, in the second frame, all templates available. The last line in the top section contains patient information (name, birth date, sex, and race, if available) and a “Text Pos” button, which allows the user to set the screen with text on the left (top left and right, bottom left example of Web page) or the right (bottom right example of Web page). The template for an arteriogram is shown. The date is pre-filled with the actual date, and all answers are “blank” ([similar]). At the bottom of the template, “SAVE” and “Reset” buttons allow those actions. In the first example ( ), the user has answered “no” to “Abnormal” and “Chemoembolization.” Answering “yes” to “Abnormal” moves (“autoadvances” and “flips”) the answer “yes” to the top of the panel and shows new questions indented at least one level ( ). Answering “Aberrant anatomy” does not result in a page change, but answering “Vascular mass” with “yes” results in a request to define the size of the mass at a second indentation level ( ). The remainder of the questions continue to be shown at their original indentation level ( ). Buttons allow predefined choices; shaded areas allow numeric input; and red, underlined text (color not shown) defines links to other pages within the database.

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