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iPhone App Capturing Hepatitis C Research Data

iPhone in hand

(nvtriab, Pixabay)

5 October 2015. An app made for the Apple iPhone now allows people with hepatitis C to record real-world data on their experiences with treatments and living with the disease. The C-Tracker app, developed by Boston Children’s Hospital, is available as a free download from the iPhone App Store.

Hepatitis C is a viral infection affecting the liver, with some 3.2 million infected with the virus in the U.S., according to Centers for Disease Control and Prevention. The disease is transmitted through contact with infected blood; intravenous drug users sharing needles are among those at the highest risk. The virus causes inflammation of the liver and can lead to scarring and poor liver function (cirrhosis) over many years. Because there are no symptoms early on, many people with hepatitis C infections do not get treatment until more serious complications occur.

C-Tracker aims to capture information from people living with hepatitis C, to fill in many of the blanks left by clinical trials that test new drugs under carefully controlled conditions. The app acts as a continuous survey of individuals with the disease, asking about their health, activities, medications, and effects of the disease on their day-to-day lives. C-Tracker’s developers, from the Computational Health Informatics Program at Boston Children’s, say data collected by the app are de-identified and maintained anonymously.

The app is built with a mobile software package taking advantage of Apple’s ResearchKit platform. ResearchKit is an open-source framework that makes it possible to collect medical data with surveys, like C-Tracker, or with sensors connected to iPhones. The platform also contains templates to describe the conduct of studies and capture signatures for informed consent. In addition, ResearchKit integrates with HealthKit, Apple’s mobile platform for monitoring an individual’s health and fitness.

Data from C-Tracker are stored in the cloud according to the requirements of Informatics for Integrating Biology and the Bedside, or i2b2, that integrates clinical research data with results of genomic testing. The i2b2 framework, also open-source, is in use at academic medical centers and in industry, and aims to encourage personalized treatments for people with inherited diseases.

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