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AMIA Annu Symp Proc. 2005; 2005: 1090.
PMCID: PMC1560831

POND4Kids – Architecture of an Online Pediatric Protocol Database for Collaborative Research

Abstract

The Pediatric Oncology Networked Database (POND4Kids) is an online, multilingual database for pediatric hematology/oncology patients. Its purpose is to improve the care of pediatric oncology patients in countries with limited resources by the exchange of information and experience between oncologists in diverse geographic regions who practice in a similar medical environment.

Objectives

The major objectives of POND4Kids are to:

  1. Store patient data so that it can be easily retrieved, analyzed, and reported for purposes of quality control
  2. Provide uniform data collection so that data can be meaningfully compared to other centers
  3. Provide a single tool for data storage and retrieval so that data managers can be trained more easily
  4. Develop an online system that is available in multiple languages at no cost to users

Methods

POND4Kids tool allows uniform data collection so that data can be meaningfully compared and shared between centers. POND4Kids is a centralized web server (Linux, MySQL, and PHP ) that can host multiple virtual sites. Each site has an administrator that can add users and control the level of access of each user. Levels of access include 1) viewing records 2) add or modify records 3) share records with users at another POND4Kids virtual site. Individual records or sets of records can be shared with another individual at anther POND4Kids site. Records can also be shared based on search criteria, such as disease type. Shared records have personal identifiers removed. Sharing can be removed at any time. The intent is to allow the records of a particular disease type to be shared with the protocol or disease expert for research and analysis. Users can also create Quick Data Entry forms that can be used within a POND4Kids site or shared with other sites via a common library. Protocols templates can also be created and used locally, or shared with other virtual sites via a common library.

Outcomes

Over 10 countries are currently using POND4Kids to analysis. In the first year of operation (2004), over 5000 records have been added to POND4Kids. Records are being shared by disease type with the expert on that disease for research analysis. The major challenges have been with training, usability of interfaces, and accuracy of data entered. Accuracy problems are the result of data being entered in the wrong fields or typos. The common shared Quick Data Entry forms and the Protocol template forms have allowed consistent data collection and enabled comparison of data across multiple countries. Future challenges include the synchronization of a network of online and offline POND4Kids servers.


Articles from AMIA Annual Symposium Proceedings are provided here courtesy of American Medical Informatics Association