Using mobile devices the HEP study will collect high-resolution clinical information and treatment response, in real time, from study participants.
New York (NY) and Boston (MA) (PRWEB) June 11, 2012
A large multi center personalized medicine study, known as the “Human Epilepsy Project” has set a goal of identifying factors that can predict the outcomes of epilepsy and its treatment. The study will follow patients for a minimum of three years and characterize their clinical course and evolution. It has the potential to provide new insights into the biological basis of epilepsy, which will advance our efforts to discover effective treatments and cures for these important disorders.
The Human Epilepsy Project (HEP) is established as a partnership between 26 academic centers, foundations and industry in the US and in Australia. HEP will enroll 500 patients with newly or recently diagnosed focal epilepsy.
An iPod Touch device with special software is provided to each participant. A special interactive reminder system, controlled by the study coordinators, was developed for this study for easy and on-time data gathering. In addition, a back-end system is used by study coordinators for the coordination of study activities and for data acquisition and management.
HEP will collect high-resolution clinical information and treatment response, MRI’s, EEG, and blood and urine samples for biomarkers. A major outcome of the project is to create an open data repository of clinical information and biologic samples for future studies.
“As a research organization, the Epilepsy Study Consortium is delighted to be able to provide advanced mobile electronic tools to patients involved in the study so they can easily and accurately record in detail their daily experience with epilepsy. This way, we can get the best possible data about their epilepsy and their specific therapy,” said Jacqueline French, MD, professor of neurology and director of translational research and clinical trials at NYU Langone’s Comprehensive Epilepsy Center. Dr. French is Director of the Epilepsy Study Consortium , and one of the principal investigator’s of the study.,
“Because the product is available on popular mobile devices, patients can record pertinent events and observations at the time of their occurrence, increasing accuracy and reliability. The data are stored securely online, and can be processed in real time. In addition, the back-end system supports multi-site operation whereby each coordinator can control only data from their patients while study administrators can view data gathered from all patients at all centers.” said Dr. Eyal Bartfeld, President and CEO of Irody.
The My Epilepsy Diary, which is the consumer version of the research diary tool, has already been used successfully by more than 15,000 people in the United States and in Australia to better manage their epilepsy. The My Epilepsy Diary is uniquely designed to capture comprehensive patient information and to assist patients with their daily routine. This includes various indices related to a patient’s health, which may impact treatment options and effectiveness.
For further information
About the Epilepsy Study Consortium
The Epilepsy Study Consortium (http://www.epilepsyconsortium.org/) is a not-for-profit organization dedicated to performing and improving clinical trials in epilepsy, thereby speeding new therapies to patients who need them.
The Human epilepsy Project (HEP) (http://humanepilepsyproject.org) is a large, five-year, prospective study whose primary objective is to identify clinical characteristics and biomarkers predictive of disease outcome and progression, and treatment response in patients with recently diagnosed focal epilepsy. A major outcome of the project is to create an open data repository of clinical information and biologic samples for future studies.
Irody (http://www.irody.com) is a privately-held technology company devoted to helping patients with chronic conditions leverage mobile technology to better manage their health.