MEDPED WebDB : the development and evaluation of a Web interface to store familiar hypercholesterolemia epidemiological data

Familial Hypercholesterolemia (FH) is the most common monogenic disease, occurring in 1:500 people. The MEDPED study (Making Early Diagnoses to Prevent Early Deaths) was established to assist patients with FH. MEDPED tracks the lipid levels of registered patients and provides recommendations for best-practice treatments of the disease. The current project was undertaken to provide the MEDPED study with a new Web-based patient registration application. The goal of the MEDPED WebDB is to replace the functionality provided by the original VAX patient registry application. Additional development goals include: 1) Transferring of patient data from the legacy system into a new relational database schema; 2) Making the application more accessible through a Web-based interface; 3) Providing checks for data quality and data integrity; 4) Allowing for easy modification of the application to meet the changing needs of MEDPED. After using the WebDB application for no less than 1 hour, users (N=7) filled out an online evaluation. The instrument consisted of 21 Likert scale questions, 2 experience questions, and 3 open ended questions. The application received positive evaluations by its users. General praise was noted for all features and functionality of the application with few exceptions. Evaluators significantly favored the WebDB over the original patient registry application (pO.0001).