Cancer Genetics Clinic

The Cancer Genetics Clinic counsels patients at risk for hereditary cancer. After several years of operation they had assembled a sufficient body of data to use for research purposes, but realized that their traditional data capture process, handwritten entries in paper charts, was unsuited to their research needs.

The Center for Clinical Informatics developed a custom research data entry application, using the STRIDE platform, tailored to their needs. The basic requirements for the project were:

• Wherever possible favor dropdown lists over free text entry (i.e structured data entry)
  
• Conform to all HIPAA regulations.
  
• Support both pre-configured data reports and custom research queries.

Starting with a specification for the data entry fields for each data entry form, the STRIDE team mapped each field to terms in the controlled biomedical vocabularies, chiefly SNOMED, ICD-09 and RxNORM. After creating vocabulary lists for each of the components in the data entry forms, the team created an XML file that maps each vocabulary term to the corresponding data entry field in the user interface. The resulting data entry screen looks like this:

All biomedical research applications developed on the STRIDE platform are HIPAA-compliant, offering secure data hosting, full access auditing and data backups, coupled with Kerberos authentication of passwords and container managed security on the server application.

The Cancer Genetics Clinic researchers have been using this STRIDE-based application since August 2004 to enter their historical and ongoing research data. In late 2004 the STRIDE team released a product update featuring an enhanced user interface, including an activity history list and a user-managed "favorites" list. This release also included a new application to run pre-configured but customizable data-driven reports. The summary report shows simple summary statistics for data acquired from all input screens. The data report, customizable by selecting which data entry fields to include in the report, tabulates data across all records for a given input form. The statistical report, also fully customizable, shows summary statistics for a given input form.

The ability to craft and run dynamic research queries was added in early 2006.