C Tracker lets hepatitis C patients participate in outcomes research

C Tracker lets hepatitis C patients participate in outcomes research from their iPhone

ResearchKit-based app will capture real-world daily impacts of hepatitis C to help drive improvements in treatment

BOSTON (October 5, 2015)Boston Children's Hospital and Boston Children's Computational Health Informatics Program (CHIP) are pleased to announce the release of C Tracker, an iPhone app developed using ResearchKit that will let patients living with chronic hepatitis C become active participants in outcomes research, using technology they already have in their pocket.

More than three million Americans suffer from the negative effects of hepatitis C. Highly effective medications for hepatitis C have become available in recent years, but there are only limited data on how patients respond to these drugs in the real world. C Tracker offers an unprecedented opportunity to fill that gap by capturing the daily experiences of hepatitis C patients along the full spectrum of the disease —information that could collectively help drive improvements in treatment.

The app engages populations in hepatitis C studies on a national or international scale, free of the constraints of geography.

"By and large, the data we have now about hepatitis C treatments come from traditional clinical trials," explained Ken Mandl, MD, MPH, director of CHIP, and principal investigator of the C Tracker project. "With C Tracker, we can listen to the patient voice to learn how people live with hepatitis in the real world.

“C Tracker will evaluate the impact of hepatitis C on people’s lives in ways we never could before,” he added. “It turns research participation into a patient-driven, democratic endeavor.”

Patients living with chronic hepatitis C-related liver disease can use C Tracker to track their health, medication use and quality of life over the course of months or years. C Tracker uses Apple's HealthKit to collect a patient’s daily activity and other relevant health data with patient permission. The anonymized data will provide a window into patients' real-world experiences with hepatitis C.

Along with C Tracker, the CHIP team has also included a framework, called C3-PRO (Consent, Contact and Community framework for Patient Reported Outcomes) that can connect any Apple ResearchKit app to an open source data platform called i2b2. Already in use across more than a hundred academic medical centers, i2b2 lets centers analyze and share clinical data for research.

“ResearchKit makes it simple to create easy to use research apps that allow us to take research out of the clinic to where patients are,” said Pascal Pfiffner, MD, PhD, a postdoctoral fellow in CHIP and lead software developer of C Tracker. “C3-PRO seamlessly integrates data collected from ResearchKit apps with data from the care delivery system.”

"Traditional clinical trials are plagued by abysmal accrual rates, slowing progress in discovering cures," Mandl said. "We foresee a future where ResearchKit apps like C Tracker lower the barrier to participation and speed medical progress."

C Tracker is free and available for download on the App Store.

To learn more about C Tracker, visit c-tracker.org.

Keri Stedman
Boston Children's Hospital
617-919-3110 | keri.stedman@childrens.harvard.edu

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